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.
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.
Not much has changed today. Karsie is still on 1hr feeds and we are hoping that the spit-ups will decrease a little. Her Nurse Practitioner wanted to give her another 24 hours to see if she might have fewer spit-ups before condensing her feeding. No change in calories or amount either. Her weight stayed basically the same, which is also ok, since the one night gain of 88 grams was enough to cover 3 nights growth! The exciting news for today is that the orthotic device is almost ready. It was fitted again today and fits pretty well. The orthotist wanted to cut down a couple areas along the bottom and then add the strap. Tomorrow we will be testing it with her car seat to make sure everything fits!
On Tuesday, Karsie did pretty well! She is now eating 67mL an hour with 25cal per oz. She is handling the increases very well. She is still having some spit-ups but well within her normal range (and mostly always when she is pooping). The plan is for her to condense again (30min of feeding and 2.5hr off) sometime today. She is now taking 20-30mL from the bottle on a regular basis (and once she took 50). Last night she took 36 breast feeding too! She is working hard :) She is also growing... the other night she went all the way up to 3.305!!! This was an increase of 88grams in one day. It very well might be lower today, but even so, the trend is moving in the right direction. Her head and length both increased 1cm this last week also! The Orthotics department at the hospital is creating a device for Karsie to wear in the car seat so she can use a regular rear-facing seat. They brought it by yesterday to try it on and it was just a tad snug. They are coming by again today and I will try to get a picture of it. It was inspired by a device made for another "O" baby (an article in a medical journal). It is a fancy foam doughnut that will go around pinky when she is in the car. Finally, Karsie made the move last night to C-Pod. This is the step-down unit at Children's. She still has the same doctors and nurses, but is in a much larger room with way fewer babies! We LOVE C-Pod. There are only 10 beds in the whole giant area. It is much quieter and more spacious. Nana is getting Karsie all settled in her new bedspace!
10. Getting a weekend where I don't have to drive ANYWHERE.
9. Walking a few steps to check on our baby instead of driving 20 min. (after the 5 hour drive)
8. Getting to see Karsie between the times of 6:30 and 8:00.
7. Not having to wait for a phone call at 11:00 p.m. to get an update.
6. Seeing Karsie on a Monday, or Tuesday, or Wednesday, or Thursday.
5. Not hearing bells, sirens, alarms, etc.
4. Not having to feel like I need to hush people talking too loud around my daughter when she is trying to sleep without feeling like it's not my place.
3. Spending time with my girls without anyone else around once in a while.
2. Getting to take off my hospital band.
1. Having grandma, aunts, uncles, godparents, adopted aunts and uncles, friends and relatives able to see Karsie when they want to.
Day 74... we are on day 74 of Karsie's life. She has endured 74 days in the NICU... with all the surgeries and tests and fear and strangers and medicines and shots and noises involved. We have endured 74 days of parenting in the NICU... with all the stress and fear and commuting and nurses (mostly good) and doctors (also, mostly good) and information overload and time apart and waiting involved. In these 74 days, we have changed her diapers and bottle/breast fed her approximately as many times as the average parent does within the first 3 days of life. The average NICU stay of a premie with similar gestational age and weight is between 10-35 days. Karsie has doubled the high end of average... and lasted seven times the low end. We knew that we were in for a long stay even before she was born and we feel so blessed that she is on track to be home far before the doctors expected. However, the closer she gets to coming home, the more patience we feel we have to exercise. It is hard to see her daily progress and then have to leave the hospital without her. Therefore (to help me focus on the positive), here are 10 things I am looking forward to when we get to bring Karsie home!
10. Getting to make our doctors appointments at a time that works for us (and actually taking Karsie to the doctor, instead of us going to visit Karsie at the doctors). 9. Not worrying that I will offend the nurse if I ask her to do something a different way. 8. The idea that someday, I might be able to retire the breastpump. 7. Nursing somewhere other than the NICU (like the rockers on my parents balcony). 6. Retiring a small amount of my germ-a-phobia that comes with the nasty hospital. 5. Going out in public without worrying about how long until I have until I have to pump again. 4. Not having to ask the nurse if she pooped yet today. 3. Not having to coordinate all the wires when I want to hold my girl. 2. Having all our friends and family meet the little miracle they have been praying for. 1. Being a family, all together, at home, alone.
Thanks for all your prayers and support... they really do help us get through this all.
Karsie is still working to get out of the NICU! Today (or rather sometime last night) her feeds were condensed to 1hr on and 2 hr off. She now gets 67mL over 1 hour! She is doing very well with that and in the next day or so she will condense again down to 30min!!! She is also having fewer spit-ups. Over the last three days she has only had maybe 2 medium sized spit-ups. This means she is tolerating the condensing. She is getting better at taking the bottle, taking from 10-30mL each time within the 30 minute limit. She also went up to 25 calories/oz today. The dietitian is still a little concerned with how slowly she is gaining weight. She is at 3.217 today for her weight. Therefore, it is possible she might get a blood transfusion within the next week. She is working on making her own red blood cells, but with everything else her body has to do, she is a little low. This is not a huge problem, because her body is working on fixing it... but a transfusion might help her have a little more energy. The problem with doing the transfusion would be that it would signal to her body that it can stop making red blood cells because she has enough, and it would start the whole process over again. The doctors and nurse practitioners will watch her weight and her levels closely this week and decide if the benefits are worth the risk. This will also give us a chance to donate blood for her to receive if she does get the transfusion. She is doing really very well, just progressing slowly.
Today Kevin went back home to rest more and try to keep the rest of us from getting sick. We really didn't get to spend much time together as Thursday we were in meetings most of the day and then he got sick Thursday night and moved into the other bedroom until this morning. As a result of the illness, Karsie has not had much in the lines of visitors today. Michelle went out for a very short visit this afternoon to take some more milk to the hospital. Michelle doesn't feel sick but we are being extra careful not to give Karsie any germs! Grandma and Grandpa are staying home too just to be safe. However, despite the lack of visitors, Karsie is having a good day. She took her bottles last night and today pretty well. At 9pm last night she ate 15mL, at 3am she ate another 15mL and then this morning at 9am she ate 30mL!! Pinky looks good. Michelle changed the way it is wrapped just a tad to give her skin a rest from all the tape on her sides. Instead of the Morgan Straps (big tape pieces) she gets wrapped with something similar to an ace bandage to hold the foam in place. This is allowing her skin to breath a little more and is probably much more comfortable than having tape halfway across her back. She lost a little weight last night and is down to 3.21. Hopefully that was just after a big wet diaper and today will even out a little more. According to the nurse, Karsie spent most of the day awake and alert. She watched a little Nature Baby video and spent a good chunk of the day looking at her mobile. It is really hard for Michelle to stay home knowing how awake she has been today. Hopefully tomorrow, if Michelle still feels well, she will get to visit more. Here you can see the giant tape pieces that hold the foam stable. Those have been removed and the sides are now being supported with a gauze wrap. The straps might return, but for now we are giving her skin a rest. Here is what Karsie sees of Pinky. The granulation tissue looks amazing! This is a side view, and you can see how far up the skin/granulation tissue has grown. A view of Karsie's face... only one tube left (her feeding tube). Hopefully within a week or so that will be gone!
Kevin is officially sick. He has been locked in the bedroom feeling icky for two straight days now. He is really bummed that he seems to get sick on the weekends; when he has a chance to relax his body lets the germs take over. The rest of us are doing everything we can to stay well, which includes skipping the nighttime visit to Karsie so as not to possibly give her any germs. So far she is doing well. Eating: she is still getting her feeds over 1.5 hours and then has 1.5 hours to digest and rest. She takes 2 bottles and 2 breast feeds a day. She took 8 and then 16mL today on her bottles, and did pretty well with breast feeding last night and this morning. It looks like she will be moved to 1 hour on and 2 hours off on Monday. She still is having some spit-ups, but not more than her usual 1-3 a day. Growing: Karsie is on a 2-day streak of big growth. On Thursday morning she weighed 3.170, Friday morning she weighed 3.205, and this morning she was up to 3.248. That is a 78gram increase over two days! This is great and will hopefully continue! The goal is 30-60grams a day, and Karsie has some catching up to do! Hopefully this is a sign that the Elecare (formula) is helping and she will continue to gain weight at 24 calories. Moving: still no word on if she is going to move for sure, but it might be in the works. She will still have the same nurses and nurse practitioners and doctors, just down the hall.
Please pray: for Kevin as he fights this sickness, that the rest of us would manage to stay well (we have bought out the Target supply of disenfecting wipes), and for Karsie to be healthy and to continue to make progress with eating and growing!
Kevin is still fairly sick. We're pretty sure his weekend with Karsie is done. Even if he got better through the night we would want to give it at least a day to let it pass, which brings us to the end of the weekend. He's really bummed.
Karsie, however, is doing great! She is getting just a teensy bit more from the breast every time, so hopefully she will be a good little eater by the time they push her to bolus feeding (3 hours worth taken in 30 min.). She took about 22 mL this morning and 24 mL this evening. She is also getting 2 bottles a day and taking 10-15 each time. She is still spitting up, but she is producing much less volume. They decided to hold off on bumping her feeds up to 1 hour on-two hours off. The reason is not that Karsie isn't handling it, but that they want her to take a break from the daily increases before moving on. We're okay with that decision. We were thinking that she would need a break soon anyway, however we were thinking it wouldn't be until the next increase... but this one's fine.
Finally, there's been some talk about moving her to a different unit in Children's. The current unit she is in is the one in which she started, and it is for very acute babies. The other unit is a little more spacious, quiet, and for babies like Karsie that just need to eat and grow. We hope that if we move we still get our primary nurses, but we are very excited to move if given the opportunity.
Unfortunately, Kevin is in bed sick so that may mean a ton of blogging today. We hope it goes away soon, but if not he will probably go home tomorrow to avoid spreading it around the house. The meetings did him in yesterday.
Lots of good news to report today. First of all, Karsie measured heavier yesterday. She weighed in at 3.205 kilos. We measured her three times to make sure and that was the lightest but it was the one that read twice.
Breathing: This will be our last report on breathing. She has been off of her nasal cannula for a few days now and handling it just fine. We of course will update if it gets worse, but we are confident it won't.
Pinky: Still looks good. Nothing to report except continual growth of skin.
Feeding: She has handled the 1.5 on 1.5 off well. She had two small throwups today (one last night and one this morning) but nothing big. Michelle didn't stay for rounding, but from what we can tell she will be pushed to 1 hour on 2 hours off. This is the area we think she will struggle the most, but she has surprised everyone thus far, so maybe it will be a breeze. She has been taking more from the breast lately (thanks to some accurate latching and help from Reva and our lactation specialist at the hospital). She took 22 mL this morning in the half hour time. We're getting there! Also, she took from the bottle last night. We're very excited about that because the bottle feeding is the feeding that has the extra calories (that and the ng tube feeding) which helps her get bigger. She had been barely taking any when we last tried the bottle, so we shelved the bottle for a while and let her take only the breast. Yesterday she took 10 mL, which is what her average was before she wouldn't have anything to do with it. However, last night she took 15 mL. We're in the process of experimenting with different equipment (bottles, nipples, etc.) so hopefully there will be a solution soon. Closer and closer we are to the end. Just keep swimming, just keep swimming!
Random: The hospital put the final order form in for Karsie's turtle shell (the thing that will protect her in the car seat and such). We're very interested to see how that turns out. Also, physical therapy is coming by around noon to do an assessment of her. They'll check out how she is doing with muscles, neck strength, etc. based on her weight and age. Lots of stuff happening.
Don't get excited...this is just a fart smile! But it's cute.
Alright, first we will tackle Karsie's current situation. Then we will tackle the meetings. We were at the hospital from 9 to about 5:30, not with Karsie most of the time. But we did get a fair amount with her.
Breathing: Still off and doing well.
Pinky: Looks great and healing well.
Feeding: At noon today she has been increased to 1.5 hours on 1.5 hours off. She still is not gaining weight. She sits currently at 3.17 kilos (just under 7 lbs.). She had two spitups today. One was fairly sizable and one was just a small amount.
Meetings
Family Conference: We love our neonatologist for this week, Dr. Settner. We all talked about Karsie's situation first. Basically she is doing very well except for the weight gain. They expect her to throw up a bit, but they need to do something to help her keep the calories she needs to gain weight. With throwing up that makes things interesting. At this point we are working on condensing her feeding, increasing her calories (until she gains weight consistently), and oral feeding all at once. They want Michelle to breast feed for about half of the feeds (3 times a day at this point...once with a bottle at 3 a.m. as Michelle probably doesn't want to get up at 2 everyday). At this rate, barring a setback (which we expect but hope against), she could be bolus feeding in a few days. If she starts to take everything orally soon thereafter and gaining weight...well...we won't say it, but we'll say there's not anything left.
Orthotist: Michelle and Reva did a lot of researching this week and found some devices (along with help from our MOO friends...thank you guys so much) to help support Karsie's omphalocele after she leaves...like in the car seat and tummy time and such. The orthotist came by and did a bunch of measurements of Pinky and he is going to create some devices to help protect that during times that we need it. We're pretty excited about that because it looks like we can use this to support it in her normal car seat.
Dr. Saenz: He just happened to stop by and chat with us a bit. He okayed the use of the device the orthotist will create and put in his input. We really didn't get to discuss everything about the compression wrapping with him, but he did look at it a bit (in fact, he knew most of the doctors that wrote some of the articles of case studies we found). At this point he says he doesn't think Karsie will benefit from it as there really isn't anywhere for it to go, but we can reevaluate later. Until Karsie is older she really won't need it other than to keep in what goes in naturally, but we are very happy that he is looking into it. Also, it looks as though we will need the tissue expanders anyway even with the compression wrapping, but we'll have to play that by ear.
Dr. Gosman (plastic surgeon): We really only had a bedside meeting, but we got most of our questions answered. The surgery is relatively low risk. They put in the expanders to help stretch the muscles and skin so that when they need to do the final surgery(s) they have something to work with and the organs have somewhere to go. The good news is that most babies go home the next day. The bad news is that the expanders need to be constantly pumped with more fluid to expand them. This will be done with a shot, that will hurt Karsie, probably by either a member of Dr. Gosman's team here in San Diego, or us. Both cases cause an issue with us. If it's done here in San Diego, that means a trip down weekly. If it's done by us, that means we are the ones hurting Karsie every week. We have a hard enough time giving our puppies their shots. Most likely this surgery won't be until Karsie is a year old and eating and breathing very well for a long time. The expanders will probably be in for a few months and then they will do the closure surgery. The closer surgery might be one surgery or a few depending on how much muscle they can get around the organs. If they can't they will put a patch connecting the muscle tissue (sound familiar?).
The long day ended with a class we were encouraged to take for discharge.
This was taken today without her nasal cannula. We'll have more for tonight, but we thought we would give you a sneak preview of Karsie's face. The tape is off now, so other than her tube and the tape that holds that, she has a face!
Update: So, Kevin forgot the camera on the kitchen table. We'll have to extend the promise to take pictures without the tube until tomorrow. Sorry. But she's still adorable...and still no spitups so far tonight. Keep eating your calories Karsie!
Well, today has been another pretty good day. Feeding: Karsie has only had two very small spit-ups today and has been tolerating the feeding well. She is still getting 2 hours of continuous and 1 hour off. She is getting a total of 64mL in the 2 hours. That will be increased to 66mL over 2 hours now. Today she is going up on calories again. Last time this was attempted with the formula Pregestimil (and she threw up lots that day). Today she will be going from 22cal/oz with rice cereal and breastmilk to 24cal/oz with rice cereal, breastmilk and the formula Elecare. This is the most digested and hypo-allergenic formula used in the NICU so hopefully she will tolerate this well! If she tolerates this, the plan for tomorrow is to condense her 66mL to 1.5 hours on and 1.5 hours off. Karsie is also being given oral feeding attempts 4 times a day. She can breastfeed 3 times and will be offered a bottle in the night. This is all trying to move towards having her take all her feeds orally. She is still doing a good job breast feeding, but the scale is giving mixed results, so we are not sure exactly how much milk she is taking by breast. She is also having less spit-up lately (which is good for her healing and good for our emotions).
Breathing: She is still off the nasal cannula and doing very well!!! She has been breathing at a good rate and her O2 saturation has been 98-100 the whole time! YAY!
Growing: Last night when Karsie was weighed, she went from 3.195 down to 3.17. However, she was weighed for the first time without the nasal cannula. This probably accounts for the loss... but it also means she is not really gaining. Therefore it is even more important that she tolerate the increase in calories... she really needs to grow! The dietitian, Laura, feels that she will tolerate everything better as she gets bigger... but she has to tolerate everything to get bigger. So she is kind of stuck in this neutral area until she tolerates an increase in calories and grows.
Meetings Tomorrow: We are having two meetings tomorrow and they are both important. We are meeting with the plastic surgeon tomorrow to talk about the tissue expanders and how that surgery will work, when it will happen, and what we hope to get out of that. We will also be able to ask some questions about the long-term cosmetic effects of all this (aka will Karsie ever have a belly button and what will her scar look like). We will also be having a family conference with one of the neonatologists, a nurse practitioner and possibly Dr. Saenz, our surgeon. We will be discussing the next steps in treating Karsie and maybe starting to discuss her discharge! We will also be spending some time talking about both compression wrapping as well as the car seat situation. We have done some serious research on both of these topics and hope the doctors will listen to our concerns and take into account the experience of other families in this situation.
Kevin is coming down tonight to attend these meetings (which we thought were going to be today when he got down but ended up getting pushed back), and spend the weekend with his girls! So, you can expect more pictures over the weekend as he is the one who is technically savvy! :)
Breathing: They actually took off the nasal cannula to see how she would do.
Feeding: Still doing well. Tolerating 2 on and 1 off. Laura, Karsie's dietician, wants to start increasing her calories again, but not at the same time as a condense day. We'll see how they work that out.
Compression: Dr. Saenz came by the bedside when Michelle was there and she mentioned the compression method. He said he would be happy to look into it. That willingness really makes us happy, even if it doesn't work out that she can have that done.
Kevin here: I'm just sitting around and thought I would pass the time by writing a little note on the blog. This is probably the worst time of the day for me: right about 9:00 anxiously waiting for an update. Other times go by quicker because I'm at work. Michelle usually goes in around 8 or 9 in the morning and gets out around 11:00. It's perfect because it's my prep period and I can usually take a quick phone call. She also goes in around 3:00 and I get a phone call around 4:00ish, which is around when I get home, so the time doesn't seem so bad. However, this is the worst just waiting. It's time for Karsie to prove she's a Turner by eating everything and then more so she can come home.
Speaking of which, since our last post Karsie has been doing quite well. She is handling the 2 hours on 1 hour off feeding well. She didn't have anymore spitups today, which is great. At least her stomach is getting a chance to digest and get hungry for an hour. She needs to know what that feels like (my humble opinion). I am very excited about her doing so well breast feeding for one very big reason. Once she is handling the condensed feeding on 1/2 hour on 2 1/2 hours off, they will try to get her to feed orally. I figure since she is doing so well already and getting much more than her hour's worth in one feed, once she is hungry and used to having a lot to digest, she will do okay on her oral feeding. At least that's what it seems. I'm not sure what would keep her in the NICU after she is feeding completely by mouth, so here's hoping.
Michelle also told me that they took her down on her O2 flow today to 200mL. That's just a tad lower than the 1/4 L. The only reason it's staying on at this point is by our request. We really want to give Karsie the best chance at feeding smoothly, and since she's just a click away from being off the nasal cannula anyway we figure what's the harm at this point?
I got in touch with another mom with an omphalocele baby today. She has commented on our blog before, so if you get a chance to read her blog (I hope she's okay with me saying this) go to Baylee and Blair's website. It is so very similar to our story and it was nice to be able to talk to her about some of the things we can expect with Karsie during her first year. Little Blair is just about 1 1/2 years old and has just had the surgery to close up her stomach, so she will need lots of prayer, but she is doing very well. Their family still needs lots of prayer for the two girls (and the mom), but it's wonderful to see the progress made.
Well, I guess I've blabbed enough. We'll probably put up another post tonight for an update (unless there isn't any news, which is very probable), but for now, take care.
So, Kevin's a sucker! God forbid the day Karsie learns to work him because all she has the ability to do now is look at him and he has already promised her two ponies during that time (we're erasing this message when she's old enough to understand). This message is courtesy of Ruth.
Karsie is doing very well today. She has grown to 3.195, up 10 from yesterday. That is still below par, but she's at least growing. She has handled the 2 1/2 hour condensed feeding and, barring any setback between 11 and now, she will be brought to 2 hours on, 1 hour off. In other words, they are giving her time to get hungry, one hour to be exact. So, she is getting about 70 mL of breast milk in 2 hours and then getting an hour to rest and let that digest. Hopefully she handles that. Again, our goal is to get to 1/2 hour on, 2 1/2 hours off and eventually completely orally fed. The good news with that is when she gets breast fed (especially at night) she has taken 30-40 mL, so she has it in her to do it. We just need to keep her from throwing up. She did have a VERY tiny spit up earlier today and a more moderate one when Michelle was there with her. Other than that, as far as we know, she is keeping dry. We're still keeping her on nasal cannula (per our request) to help keep her tolerating the feeding and not having trouble breathing.
..knock on wood. Karsie did well her first day of condensed feeding. She threw up twice, but that's well within her normal range. She also drank a good 30 mL of breast milk tonight and, when Michelle left, kept it down. Also, we know we put up a video of Pinky a day or so ago, but even from that there is a noticeable improvement of the skin. It looks very, very good. We are very excited about that. Time marches on..
We're doing an all out blitz for information lately on tissue expanders versus compression. We're still not sure we have all the information on each of those, but we definitely don't want to put Karsie through a surgery if she doesn't have to.
Therefore, if you're a MOO (Mother of Omphalocele) or know one, or know information about:
1. Compression Method/tissue expanders; and
2. Who does them around us in Southern Cal (or the west coast)
Weight: Karsie dipped a little today to 3.185 kilos. This is not surprising as it seems to be her trend. She gains and then she dips a little. Hopefully she continues to gain.
Feeding: Karsie did not throw up again last night or this morning. She also got a lot of milk breast feeding today. Good news: They are starting to condense her feeding today. She will be getting three feeds in 2 1/2 hours instead of 3 hours. Most babies take their full feed in a half an hour (a full feed roughly being 3 hours worth on average). Karsie is currently getting 23 mL an hour, which would give her 69 mL in 3 hours. We want to move her to taking all 69 mL in a half an hour instead of pacing the feeding hour by hour, so they are condensing her feeding. So, instead of giving her 69 mL in 3 hours, they are giving her 69 mL in 2.5 hours. This should go for a couple of days (assuming she handles it) and then they will start giving her 69 mL in 2 hours, and so on and so forth.
Surgeon Meeting: Please pray that this meeting goes well. We absolutely love our surgeon and want him to continue with Karsie, but we know that he is not in practice doing compression wrapping. We're going to ask him to look into it, and we really want him to seriously consider doing it as it will save Karsie one surgery. Surgery will put her back a bit (depending on when they do it) so any time we can avoid that, we want to.
Breathing: We felt like we had an option. Karsie's nasal cannula was supposed to come off today, but we also wanted her to start condensing her feeding. When they start to do this, sometimes babies need a little extra breathing support. We felt like we could have either taken her off of the cannula or start condensing her feeding (doing both would likely alter either the breathing or the feeding). At this point we are of the belief that feeding is more important to start now than breathing, since she is so close anyway. So, we asked that she stay on for a bit longer so we can start condensing the feeding. Who knows she might be off anyway when Michelle goes back tonight, assuming Karsie handles being off of it and her feeding.
Other than the awesome dressing change, watch it again and pay attention to the pacifier battle.
Update: Karsie has had a bit of good news lately. We're still concerned with her oral eating, but lately she has been gaining weight.
On Saturday we went in and we were told that they increased her calories to 24 an hour by supplementing formula. However, she threw up 5-6 times that day, which is well above her average, so they backed off the calories. However, they increased her breast milk to 23 mL an hour (keep in mind that the mL and calories are different, but their numbers are very similar). We were a bit bummed on Saturday until we started to see a string of weight gains that made us feel better about the throwing up. She was up to 3.17 kilos on Friday night (really Saturday morning) and she jumped to 3.21 kilos on Saturday. Tomorrow we'll find out if she's still on that trend.
To add to that, we had a good breast feeding the past few times. Two of those times she didn't get more than 5 mL, but one we're not sure what happened. In order to find out how much she is getting, they weigh her before she eats, and then weigh her after she eats. They can calculate the mL based off of the weight gain. Last night she breast fed for about 10 min. and then promptly threw up a bit. But we tried to keep everything on the towels that we weighed her with and then weighed her, and it said she drank 44 mL. We actually were not surprised by this as Michelle had pumped a bit before usual (which makes her flow faster). In any case, she took a lot of milk and did very well on the breast.
We have a meeting with Dr. Saenz and the plastic surgeon on Thursday to assess Karsie's situation. Their next step is to put tissue expanders in Karsie to stretch out her abdomen for it to accept the organs. If this is necessary, then we understand. However, we've been doing some research lately, and we're very interested in something called a compression method (or something similar). This is where after a few months they wrap an Ace bandage around Pinky and compress the organs inside. Every situation is different, but we really want to find out about this. We're pretty sure that our surgeon has not done this (it's not really surgery) and so it will be interesting to see how he takes it when we bring it up.
Finally, Karsie should be off nasal cannula tomorrow. Pray that her body does well without it. It's time to see her face!
A good yawn after two months of life. Compared to her first month, this one was pretty boring. Giant Phantus - Karsie's new NICU toy. She's not sure what to think about it yet. Aerobics with Grandpa. The mirror. Karsie loves to look at herself in the mirror already. We're not exactly sure what happened to the flying pacifier in this picture.
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! 
The exciting news for today is that the orthotic device is almost ready. It was fitted again today and fits pretty well. The orthotist wanted to cut down a couple areas along the bottom and then add the strap. Tomorrow we will be testing it with her car seat to make sure everything fits!
Nana is getting Karsie all settled in her new bedspace!
Here you can see the giant tape pieces that hold the foam stable. Those have been removed and the sides are now being supported with a gauze wrap. The straps might return, but for now we are giving her skin a rest.
Here is what Karsie sees of Pinky. The granulation tissue looks amazing!
This is a side view, and you can see how far up the skin/granulation tissue has grown.
A view of Karsie's face... only one tube left (her feeding tube). Hopefully within a week or so that will be gone!
Don't get excited...this is just a fart smile! But it's cute.
This was taken today without her nasal cannula. We'll have more for tonight, but we thought we would give you a sneak preview of Karsie's face. The tape is off now, so other than her tube and the tape that holds that, she has a face!
A good yawn after two months of life. Compared to her first month, this one was pretty boring.
Giant Phantus - Karsie's new NICU toy. She's not sure what to think about it yet.
Aerobics with Grandpa.
We're not exactly sure what happened to the flying pacifier in this picture.
