Record Day

Sorry I can't really keep up with daily updates anymore, but my nerdy "Peetie's Eaties" spreadsheet isn't working currently as I'm working out some computer issues, so I'm going to continue to record daily oral intakes and some details here, so I don't forget them. I also write a lot of stuff here, because I'm way behind on Sofie's baby book and if I just add this info into posts I know I can go back and find it here later. So sorry for the massive amount of detail in the last post. That was more for me than for you!

Friday night I worked my usual night shift so Kenny got the honor of the first night of waking up every 3 hours to try to feed Sofie a bottle. He was a little too sleepy and accidentally slept through the 1:00 am bottle, but he got up at 4:00 to try. She took maybe 1/2 oz, so he put the rest through the NG (3 1/2 ounces) over 15 minutes and she did fine with it.

Dr. Y. said that if we have to give anything by NG at night to be sure to do it over 10-15 minutes to mimic an actual feeding. That would allow the food to enter her stomach at the same rate as it would if she drank it from the bottle, and would also encourage rapid stomach emptying into her small intestine, something that's important for proper hypothalamus function and the hunger mechanism.

Kenny gets up with Sofie just as much as I do, if not more. The "problem" is that she has slept through the night all night, every night for several months, so getting up every 3 hours to feed her will take some getting used to again on our part! The good news is that she usually stays asleep when we do offer her a bottle at night, so she probably won't know the difference. She also tossed and turned a lot with continuous NG night feeds, so I think she'll actually get better sleep by us getting up to offer her a bottle twice a night. I'm always up til' 1:00 or 2:00 am, so the 1:00 am bottle is no biggie for me. The 4:00 am bottle will be the killer. I'm not a morning person in the least bit and Kenny has to get up for work, so I feel like I should be getting up for the 4:00 am bottle during the week when he has to get up for work the next morning. But it will be so worth it if it helps Sofie eat better.

Speaking of eating better, the night feed clearly did not zap her hunger today. She took a record breaking 21 1/2 ounces by mouth today! Yay Sofie! Her weight was also up by 4 ounces, so we're heading back in the right direction.

Friday 12.19.08 - 9 Month Check Up

Weight 6.96 (15 lbs, 5.6 oz)
Oral Intake 17 oz

Can we still call this the Pedialyte Trial, since Sofie hasn't actually had any Pedialyte for the last 2 nights? We're going to continue weaning the NG and adjust our plan on a day to day basis to keep making progress.

Last night we gave her 8 ounces of milk at 65cc/hr, so it ran in over about 3 1/2 hours. She only took 11.5 oz by mouth yesterday, because she was still a little constipated. We wanted to give her a little boost of calories and fluid, so she could get back on track. Friday she did quite a bit better. She took 17 ounces! Now hopefully we're back on track.

Sofie had an appointment with Dr. Y. Friday for her 9 month check up and her 2nd Synagis (RSV antibody) shot. We hadn't seen him since her 6 month visit, and it's been a very busy 3 months so we had a lot to talk about. I was really anxious to talk about how we'd been weaning her NG and see what his thoughts were. He spent over an hour with us talking about all that's been going on and how Sofie is doing.

The first thing he said when he came in and saw her sitting up on the table playing without her clothes on is how good and healthy she looks. His first thought was that she looks nice and filled out, even a smidge chunky (in a good, healthy way). He's very pleased with her weight and her growth over the past few months, especially since she had another major surgery. This was so good to hear for a change. Even though that's how Kenny and I have always felt, it's still really nice to hear that validation from Sofie's pediatrician, especially after being berated for being such a bad parent at the Special Care Clinic on Wednesday.

I told him about how we've been weaning the NG and gave him all the details and he was really pleased with how it's going and with all the progress she's making. I told him it was a big relief to hear him say that and went on to explain the reaction I got from Dr. R. on Wednesday. He said he was sorry that had happened, but that he felt we were doing the right thing. He thinks that weaning the NG this way by hunger provocation is the only way to get kids like Sofie off of tube feedings and back to oral feeding. He went on to talk about the hunger mechanism, the role of the hypothalamus, and retraining the brain to know and react properly to hunger along with positive associations with food. He completely validated everything I have been thinking and reading about this.

He also reassured me that Sofie is definitely not experiencing chronic malnutrition or any harm by doing this and that this was the best thing we could be doing for her right now. I told him we've always been happy with her weight and her growth, but the only thing that's ever been concerning to me is her head circumference. It's always been less than the 3rd percentile, although it has continued to grow right along the same growth curve, and even climbed a little higher on the growth curve over time. This has concerned me only because her post-ECMO MRI showed "brain shrinkage" according to the results we got from her doctors and also some possible white matter attenuation. Her cognitive development and brain function and growth have always been a primary concern for me.

He said he's not at all concerned about her head circumference, that the size of her head doesn't matter at all. He said what really matters is how she is developing and whether she's age appropriate. His exact words were, "she has my head." And I've never noticed it before, but Dr. Y. does have a small head. He said if he were to plot himself out on a proportionate growth chart, he would probably be below Sofie on the growth curve and that even today he still has to shop for his hats in the youth section. And I think he's a very smart person, so this was really reassuring for me.

Dr. Y. said he's very pleased with her cognitive development on all levels. She's age appropriate for everything except for her social and language skills, in which she is slightly advanced for her age. She's a little social butterfly and is highly interactive with people and with her surroundings. She's busy all the time and waves at everything (even the wall)! She also makes the following sounds: hi, dadada..., bababa..., and the occasional gagaga... She's been "saying" hi and da since she was about 3 months old and the ba and the ga have shown up in the last couple of months. She also likes to yell and see how loud she can be. The yelling started around 6 months of age. She still likes to spit and blow bubbles and raspberries (since July - 4 months), and this month she started swishing spit around in her mouth to make noises and thinks that's pretty funny.

The only things she is a little behind with are physical. Babies usually crawl by 9 months of age, but sometimes it's later. Sofie still isn't crawling, but he said given her medical history and two additional surgeries in the past few months, he's not surprised she isn't crawling yet, but she will and he's not worried about it. He's looking for her to be crawling around 11 months of age and walking around 15 months of age. She did sit unsupported on time, which was around 6 months of age. She would still topple over then if she lost her balance, but by 8 months of age she was really stable sitting up by herself. None of her delays are permanent, they're just related to decreased physical strength, because of all she's been through and she'll catch up quickly.

Right now if I put her in the crawling position with my arm under her chest for support, she bounces on her hands and knees and bears almost all of her weight on her own. When she's on her tummy, she can push up and fully extend her arms. Her arms are still a little weak for the good mobility she would need to crawl. The adducter muscles in her thighs are also still weak, so she tends to "frog out" when she's in the crawling position. Those muscles are still a little too weak to hold her legs together and move them in that position. So those are things we're working on right now. We're also standing her up and working on getting her to lock her knees and hips to stand up and bear weight. She does this fairly well, usually bearing maybe 10-20% of her weight in the standing position before her knees buckle and she starts trying to "dance." She's a goon - she dances to EVERYTHING now!! It's so cute! This week I found that if I put her in shoes with a good solid, wide sole, she stands better and will bear 80-90% of her weight in the standing position. Shoes help, who knew? LOL

Last night she also sat up on her own for the first time. She's been able to pull to sitting with very little assistance while holding onto your hands since around 6 months or so, and she can sit up on her own from about a 45 degree angle or a little higher, but she hasn't rolled onto her side and pushed herself up to sitting on her own yet. When I laid her in bed last night I put her on her back while she was still awake. When I came back to check on her a few minutes later she was sitting up playing in bed. She turned around and looked at me like, "Yes, Mom, is there something I can do for you?" What a squirrel. I'm not sure how she did it, but I'm guessing she grabbed onto the bumper and used that to pull herself up to sitting. Guess it's time to drop her crib down a notch so she doesn't climb out!

I've gotten a little off track, so back to Sofie's appointment with Dr. Y. I told him we felt we had reached a bit of a plateau with the pedialyte trial over the last couple of days because she was getting a bit too dry and starting to get constipated. We thought maybe we needed to give her some NG feeds to give her weight and hydration a boost, so we had given her night feeds by NG the last 2 nights, but were worried she'd backslide on her oral feeding progress by doing this.

First he said we can manage her constipation by changing her meds up a little. He asked if the Special Care Clinic had ever tried her on Miralax. I said no, just the erythromycin and lactulose. I told him I didn't think she had any decreased gastric motility, so I didn't think she needed the erythromycin at all, but that it would be easier to give orally than the lactulose because it's such a small amount if Sofie is able to get rid of the NG soon. He recommended stopping both the erythromycin and the lactulose. He doesn't think she has any problem with gastric motility either, so there's no need for the erythromycin and he thinks miralax will work better and be easier for us to give than the lactulose. Without the erythromycin, she'd probably need at least 4 mls of lactulose twice a day to continue stooling appropriately. The lactulose is super thick and very hard to give by NG. It's pretty much like corn syrup. It has to be diluted to thin it out enough to go through the tube. And 4mls is quite a bit of medication to have to give at one time by mouth if she didn't have the NG. The miralax is a small amount of tasteless powder that we can mix with any of her food or with pedialyte and we only have to give it once a day. Plus it's over the counter, so that would eliminate two of her prescription meds.

While we were on the subject of meds, I told him we also had always doubted her need for the Prilosec, but had only started it on her proactively after her 1st recurrence, since we expected her to develop severe reflux. She never did, but we weren't sure if it was because we had started her on the Prilosec before she had a chance to develop any symptoms. She's also taking Zantac, because Dr. Y. started her on it when we first came home from the NICU and she was really fussy. The Zantac immediately helped with her fussiness and that's also when she really took off with feedings. So we thought she might still need the Zantac, but questioned the need to give both.

However, we're reluctant to make any changes in that department while we're trying to wean the NG and encourage oral feeding in case changing the meds were to cause any problems with reflux. He said he didn't think she needed the Prilosec and certainly not both. Maybe just the Zantac. A lot of healthy babies have problems with reflux, but it gets better after 6 months of age and with the introduction of solid foods. At her age she should be okay with regard to any problems she may have had with reflux. But CDH babies typically have severe reflux and with her history of severe hiatal hernia, we would expect her to have significant reflux. However, she doesn't show any signs of reflux at all. We don't know if this is because she's on meds or because she just doesn't have a problem with reflux. And we won't really know unless we stop the meds to see.

He recommended stopping the Prilosec and just giving the Zantac. This will change her dose of Zantac to twice a day instead of once per day, but would eliminate the two doses of Prilosec she's currently getting, so one less dose per day overall and it also would eliminate another prescription med.

I asked about her multivitamin with iron and if she still needed it. He said he would recommended keeping her on it until she's taking more solids and also recommended increasing the dosage to 1.5 mls per day (it's 1 ml per day now), just based on her weight and because she's older. It tastes HORRIBLE, so we give it by NG now, but when her NG is gone, I wanted to make sure it would be okay to split the doses into several smaller ones throughout the day so we could get it all in easier and he said that would be fine. When she was PO feeding before we would just put a few drops in each bottle throughout the day and that was the only way we could get it in her.

So her old daily med plan looked like this:

9:00 am 3.2 mls Prilosec, 0.4 mls Erythromycin, 3 mls Lactulose

12:00 pm 1 ml Vitamin

3:00 pm 3.2 mls Prilosec

9:00 pm 2 mls Zantac, 0.4 mls Erythromycin, 3 mls Lactulose

(4 prescription meds and her multivitamin)

Her new daily med plan will be like this:

miralax powder mixed with milk, food, or pedialyte once per day
1.5 mls Vitamin (by NG or divided in several bottles when the NG is gone)
2 mls Zantac morning and night

(1 prescription med plus miralax and vitamin OTC)

I think it will be a lot easier!

The Special Care Clinic has pretty much always controlled Sofie's meds, feeding recommendations, and everything related to her oxygen. We've only been able to see Dr. Y. for immunizations, regular well baby check ups and if Sofie were to have any problems like colds, earaches, thrush, etc. Since she's been healthy except for her first cold last month and a mild case of thrush just after coming home from the NICU, this means we don't see Dr. Y. very often and he doesn't get to be too involved in her plan of care.

I told Dr. Y. I wished we could see him more often, because now that Sofie's older we only see him every 3 months, and with so much happening with regard to her feeding issues I feel like he really gets out of the loop. We also get frustrated going to the Special Care Clinic and getting negative feedback all the time. He recommended we come back to see him in 6 weeks to have a weight check and discuss her feeding progress, so we'll be back in to see him the first week of February. Sofie will also be in his office again in 1 month to receive her 3rd RSV shot, but we will probably just see the nurse for a quick shot and back out the door unless she is having any problems.

His recommendation was to continue weaning the NG and if we felt she was falling behind with her weight and needed extra calories we could offer oral feedings through the night. He said to continue PO feeding ad lib during the day with no NG supplementation. Then to offer a 4 oz bottle at 1:00 am and 4:00 am. If she doesn't take it, then we can give it by NG, but quickly over 10-15 minutes to mimic the way her stomach would fill and then empty if she were actually eating. We should also only give regular breast milk or formula that's 20 calories/oz (thickened of course) at night to try to prevent it from zapping her hunger during the day. If we try this for a few days and find she's less hungry during the day, we should dilute it some to 15 cal/oz so she's still getting the volume for hydration and some extra calories, but it might not be as filling to her as 20 cal/oz. It's just a bit different strategy to get some more calories and fluid in so we can continue to wean the NG. He also mentioned that all he would expect her to take from her bottle is 4 oz at each feeding. I told him the Special Care Clinic told me she should be taking 7 ounces at each feeding and that I thought that was way too much to expect her to take, and he agreed. I've had lots of moms tell me their kids never took more than 3-5 ounces at a time, and he again reassured me that's very normal.

I just felt so much better walking out of that appointment than I ever feel walking out of appointments at the Special Care Clinic. Dr. Y. knows her history and understands her special needs based on that, but also treats her like a normal baby and reassures me that's how we should be thinking of her as well, like a normal baby now. I feel like the clinic sometimes makes her out to be "sicker" than she really is when she really is doing fabulously. It was a nice change after our appointment on Wednesday and I needed it.

I was feeling pretty good about everything as I left Dr. Y.'s office, but I had to laugh when I looked down and realized I had worn my houseslippers. Hey, at least they matched my outfit.

Pedialyte Trial - Day 15 (Thursday 12/18/08)

Weight 6.944 (15 lbs, 4.4 oz)
Oral Intake 11.5 oz

Ugh! -Sofie's weight took a hit after her really poor intake from yesterday. Since she had only taken 1o ounces last night when we put her to bed, we decided she needed to get more calories in for the day and gave her 6 ounces of milk over an hour and a half through the NG. So she still got 16 ounces in for calories, but no extra fluid with pedialyte.

This should have allowed her to be really hungry today, just as if we'd held the pedialyte and she had eaten 16 ounces for the day. However, she didn't have a stool yesterday and didn't have one today until late afternoon, so she really wasn't very hungry today. We've got to get her adequately stooling again and rehydrated before she'll take back off with feedings. I gave her lactulose this morning and we'll give another dose tonight. We're going to give it twice a day, along with her erythromycin to help keep things moving.

I feel like we are sort of stalled out at this point. If we try to cut back on the pedialyte, she gets slightly dehydrated and becomes constipated. The constipation keeps her from eating well and it's kind of a vicious cycle. She needs a little boost to get back on track.

Since her oral intake was still not up to par today, we decided to give her another bolus night feeding to make sure her weight doesn't take a big drop again tomorrow and to try to prevent any further problems with constipation.

In other news of the Miller household, we had some pipes in our kitchen burst today. Thank goodness I was literally standing right there when it happened. I was calling Apria to find out when we'll get the sat monitor, because I hadn't heard from anyone yet, and suddenly I heard water rushing through the pipes and the kitchen started taking on water - rapidly. I ran down to the basement and water was pouring down the basement wall. I turned off the water at the pipes and it stopped. I thought it was coming from the pipes behind the dishwasher, so Kenny came home and we pulled it out and two old pipes that had been capped off had blown out at the ends. There was not supposed to be water still flowing through those pipes, so we have to investigate what's going on. It's not going to be an easy fix. Luckily it was just flow from the cold water pipe, so we still have hot water. Yay for warm showers, when it's freezing outside. Otherwise, Sofie would have been getting spongebaths for a few days from water heated on the stove.

Speaking of the sat monitor, it looks like the earliest possible time Apria could deliver it will be next week, and we'll be out of town all week for Christmas. So it looks like we will be dragging all the oxygen tanks down with us one last time. Bummer!

Sofie got to hang out with Aunt Aimee tonight for a couple of hours while we did our Christmas shopping for Sofie. We went a little overboard buying gifts for her, but we are just so thankful she's here with us to be celebrating her 1st Christmas. We have so much to be thankful for!

Pedialyte Trial - Day 14 (Wednesday 12/17/08)

Weight 7.1 kg (15 lbs, 10.6 oz)
Oral Intake 10 oz :-(


The Good, The Bad, and The Ugly...


First, our day started off with The Good as Wednesdays always do. We met with Sherry, Shelly and Dana to discuss Sofie's progress. This was Shelly's last day with us, since this semester is over and she'll be moving on to new clinical experiences. But we are happy she got to spend the last couple of months with us and we'll miss her!


Everyone was really pleased with Sofie's progress taking the bottle and also with her skills with solids. Since she's continued to make good progress and hold her weight steady (she weighs the same today as when we started the trial), we decided to continue the trial for now. We discussed holding the pedialyte for up to 3-4 days at a time, provided she has good oral intake ("good" to me is at least 16 ounces for the day) and continues to have a good amount of wet and poopie diapers. To me "a good amount" means at least 6 wet diapers and at least 1 big poopie diaper each day. We also talked about trying to decrease her calories to 24 cal/ounce to see if that encourages her to take more volume.

I remembered back to when she was 100% orally fed after coming home from the NICU. She was hungrily taking at least 5 ounces every 2-3 hours around the clock, sometimes up to 7 ounces per feeding. That's a huge volume for a 3 month old to be taking. I think it was because CMH had not considered the volume displacement of the thickener and the end result of the recipe they had given us was fortified breast milk containing only 15 calories per ounce! Plain old breast milk and regular formula is 20 calories per ounce, so she wasn't even getting a "normal" amount of calories/ounce. My thinking is that's one of the reasons why she was taking in so much volume back then - to compensate for the decrease in calories per ounce. Maybe since she's getting 27 and 28 cal/oz milk now, that could be contributing to her fullness factor. Which would be easier for YOU to drink every 3 hours? 4 cups of Gator-Aide? or 4 cups of gravy? Who knows - just a thought.

The other thing I've noticed is that her daily oral intake is directly related to how much she stools for the day (sorry to be so detailed). Since she's riding the line for adequate hydration, we're going to try to be proactive with the stooling situation and just restart her lactulose on a regular schedule, instead of waiting for her to get constipated and then start it. Each time she hasn't stooled for a day or so, her oral intake has really dropped. Which brings us to The Bad.

Sofie didn't have a stool today, so I'm not too surprised her oral intake for today was really bad. It was the worst it's ever been. It also had a lot to do with the fact that we were at appointments all afternoon and we just really got behind with feedings. I have to remind myself though, that one "off" day is okay and she'll do better tomorrow. A now for The Ugly.

As you know, I was nervous for Sofie's appointment at the Special Care Clinic, more specifically for how Dr. R. would react and if it would affect her decision to let Sofie trial off oxygen. Before her clinic appointment, she had an OT appointment next door with Laura. Laura was really impressed with Sofie's improvement in oral skills and her oral intake. I was very pleasantly surprised. She said, "Sofie, you and Kinley have been talking!" I told her they had been talking and hopefully Sofie would continue to follow her little role model, Kinley. Laura was really happy with what we had accomplished so far, and said she would recommend we continue what we're doing, because it's obviously working. She said she looks better than she's ever looked. She sounds great and she looks healthy and she's so happy. I couldn't agree more. I was suddenly really hopeful that Dr. R. would also be pleased with her progress and I started to relax a little for her appointment at the clinic to follow.

But, oh, was it ugly. I got it right out in the open at the very beginning of the appointment. I can keep other people's secrets really well, but I can't keep my own. I just have to blurt them out and get it over with. So I started with a really positive attitude and told her we were really excited because we've been working hard on feeding and Sofie has made a world of progress in just two weeks. She went from refusing everything by mouth to taking an average of 16 ounces per day, up to 18 1/2 ounces and that she's also gobbling down her solids, up to 4 tablespoons at a sitting. Sofie threw in a smile for effect.

Dr. R. asked where we are making up the extra volume and I said we are just letting her PO feed ad lib and then giving Pedialyte at night to make sure she stays hydrated and I've been watching her hydration status very closely. The bewildered look on Dr. R.'s face was the beginning of the reaction I was fully prepared for. She was very angry. I won't go into details, which is why I waited to post this - so I could collect myself a little. But I heard several not so nice things, like that I was putting Sofie in danger, why would I ever consider this to be a good idea?, and that I could be doing irreversible damage to her development.

I knew going in there would be no convincing her this makes sense from a scientific standpoint. And I also know that, yes, chronic malnutrition can hinder proper growth and development, but 2-3 weeks of getting 60% of a normal caloric intake is not considered chronic malnutrition. So I just took the tyrade calmly and told her I fully expected her to feel the way she does, that I understand where she's coming from, and that she's just doing her job. I also told her we're going to continue doing what we're doing as long as we see fit. This went on for a while and she brought the CMH dietitian in to try to talk some sense into me. But eventually we moved on to The Good part of the appointment.

Sofie gets to trial off oxygen!!!!!!! I'm so excited! After Dr. R.'s reaction to the NG weaning, I really expected her to say no when I asked. But she did agree to let her try the 30 minute trial in the office. We took her off the oxygen and put her on a sat monitor during the appointment. She had to keep her sat at 93% or higher for 30 minutes to graduate to a home trial. She kept it steady at 95-97% for 20 minutes and then Dr. R. said that was good enough for her to trial off at home. So the next step will be getting a sat monitor delivered to our house from Apria, probably tomorrow. Then she has to keep her sat 93% or above for 24 hours to pass the trial. I'm really looking forward to getting the sat monitor and saying goodbye to the oxygen. With any luck, we won't have to travel with the huge oxygen tank when we go visit our family for Christmas. We'll still take an emergency travel tank, even if she does get the okay to come off, just in case.

It looks like Sofie will be "unplugged" from one of her tubes for her 1st Christmas!!

Pedialyte Trial - Day 13 (Tuesday 12/16/08)

Weight 7.030 kg (15 lbs, 8 oz)
Oral Intake 16.5 oz

We got a snow day today and didn't end up going to Sofie's appointment at the Special Care Clinic. The roads were really bad, so they rescheduled all their patients for tomorrow instead, which works out better for us anyway. Sofie has an OT appointment at Children's tomorrow afternoon too, so now we won't have to go two days in a row.

Tomorrow morning we have our OT session with Sherry and Shelly at 9:00 am and then Dana is also coming at 9:30, so the whole gang can sit down together and go over Sofie's progress up to this point and the game plan for which direction we head in next. I'm also glad we'll be having this meeting before our Special Care Clinic appointment, so I can tell them what our plan is going to be now that we've been doing the trial for 2 weeks.

Sofie had a bit of a slower day on her bottles, but ate her solids very well. She ate 3 tablespoons of pears for breakfast. At lunch she ate quite a bit of her carrots - maybe 1 1/2 tablespoons. She also had a couple of spoonfuls of my soup, and I also tried giving her some mac n' cheese and some sweet potato puffs. She wasn't too crazy about the chunkiness of the mac n' cheese, but she thought it was funny. She didn't eat the puffs, but had fun picking them up and feeding them to Gracie. For dinner she had some applesauce and some more carrots, but still wasn't a fan of the mac n' cheese. It's so good to see her eating at the table and really enjoying it.

Pedialyte Trial - Day 12 (Monday 12/15/08)

Weight 6.990 kg (15 lbs, 6 oz)
Oral Intake 17.5 oz

Well, it's official. This girl LOVES pears. She's been gulping them down for a few days now. Today she ate at least 4 tablespoons of pears for lunch, which is a HUGE amount of solid food for her. She also took 5 ounces from her afternoon bottle today, which is the most she's taken at one time since December 2nd. I thought she might not be as willing to eat as much from her bottles today, since she's been eating a lot more solids, and since we restarted her nightly pedialyte bolus, but she still did great. Keep it up Sofie!

We're a little nervous for Sofie's appointment tomorrow at the Special Care Clinic. I'm sure Dr. R. is not going to be happy about our NG weaning process, since the clinic really pushes volume and weight gain as high priorities. If we were a little further along and she was taking closer to her goal volume by mouth, I think they'd probably be more supportive. But despite the FANTASTIC progress she's made with oral feedings, she's still far from taking the volume they want her to take every day. However, we feel strongly that this is the best thing for her when looking at the big picture of her health.

Tomorrow's appointment is also supposed to be the appointment that we initiate Sofie's trial off of oxygen, so I hope that's not delayed because of the NG wean. There's no reason it should affect the decision to take her off oxygen now, but somehow I'm sure it will. The clinic is a big fan of the rationale that if she has to work harder to breathe without supplemental oxygen, she'll lose weight. But I don't believe that at a flow of 1/8L it's making any difference in her work of breathing. Her respirations are consistently 30's-50's depending on her activity. 30's when sleeping or at rest. 50's when active. So perfect! Her heart rate is also great, usually 70-110, which is perfect and indicates she's not working hard to breathe as well. I've noticed her vitals don't change AT ALL when her oxygen is off for a short time at home, while we are cleaning her nasal cannulas or putting new ones on. I really feel like she hasn't needed it for a very long time, and I'm so ready to get rid of it! If she were a huge fatty like they want her to be, she'd have been able to trial off oxygen months ago, but they always insist she still needs more "catch up" growth. "Catch up" to what? Don't get me wrong, I think Dr. R. is a good doctor and I know she's just being conservative looking out for Sofie and trying to make her as healthy as possible, but sometimes I feel like the priorities are a bit misplaced, and that's frustrating.

I'm much more focused on the overall picture of her health and trying to integrate her back into just being a normal baby. I'd rather work hard on therapeutic play and developmental milestones than pumping her full of food all day, every day. We did that for way too long and, for Sofie, it caused more harm than good.

There's no "perfect" plan of care for any baby, whether you have a CDH baby or a baby born healthy. What works for one, may or may not work for another. You just have to weigh the good and bad of every decision you make and try to envision how it will affect their overall health and well being now and in the future. The majority of the time, I don't feel like the clinic shares my philosophy on this, but instead just inserts each new patient into the same plan of care, like they're just signing off standing orders for all of them. That really may not be the case, but that's just I how I feel about it sometimes.

If the NG wean keeps her from trialing off oxygen tomorrow, then so be it. We'll still continue on with our NG weaning, because I think it's a bigger priority right now than taking off the oxygen. If she doesn't need the oxygen and still has it - oh, well. We can just try to get them to trial her off in another month. Taking off the oxygen is really independent of her at this point. If she really doesn't need it, we'll just take it off when the time comes. But the feeding issue is so complex and interdependent. I don't want to compromise all the progress she's already made.
We'll just hope for the best tomorrow, and maybe we'll be pleasantly surprised and find they're really supportive of how far she's come.

The Champ

Sofie's been working so hard to get rid of her NG. We thought we'd share a short video of her "in training."

Pedialyte Trial - Day 11 (Sunday 12/14/08)

Weight 7.025 kg (15 lbs, 7 oz)
Oral Intake 18 oz.

Sofie had another good day of eating. Daddy has the touch! She finally had a poopie diaper today, so we've got things moving in that department, which should help. Tonight we are resuming the Pedialyte to make sure she's getting at least 23 ounces of total fluid/day again.

Pedialyte Trial - Day 10 (Saturday 12/13/08)

Weight 7.045 kg (15 lbs, 8.4 oz)
Oral Intake 12.5 oz.

Sofie slowed down on her oral intake as the day went on today. Even though she didn't get any Pedialyte last night, her weight was up by 2 ounces today. However, I think that's because she didn't have a poopie diaper yesterday or today and she's just backed up. I think it has affected her hunger as the day progressed and she needs to get things moving again in order to be hungry enough to eat the way she has been the last few days.

The plan was to hold the Pedialyte again tonight, but dehydration can contribute greatly to constipation, so we're going to change up the plan just a bit, so we can get right back on track. We're going to give her just a touch more erythromycin tonight than she usually gets and also give her a little bit of lactulose. She hasn't gotten the lactulose in quite a while - maybe a month or two. We stopped giving it when we started giving the erythromycin, because she didn't need both. We're also going to give her 5 ounces of Pedialyte. Hopefully that will be enough to rehydrate her and get her stooling again, but not enough to stifle her hunger tomorrow.

Pedialyte Trial - Day 9 (Friday 12/12/08)

Weight 6.985 kg (15lbs, 6.4 oz)
Oral Intake 16 oz.

After giving the Pedialyte again last night, I noticed Sofie was less hungry today, but still did well. The difference in fluid balance was very evident in her weight again, because she gained those 4 ounces back from the day before. I'm really surprised at how well she's held her weight throughout the trial. I was afraid we wouldn't have nearly this much time to try it, before her weight loss would be too great. I'm so glad we've been able to go this long!

I talked about holding the Pedialyte with Dana (Sofie's Dietitian) and she suggested holding it again tonight and tomorrow night to see how she does, since she did so well yesterday. If there was any doubt about what we should do, Sofie's feeding pump actually didn't work for Kenny tonight for some reason, so we had no choice but to hold the Pedialyte. Subtle hint, huh? ;-)

Congratulations Uncle Mike & Aunt Tiff!

Uncle Michael and Aunt Tiffany got engaged recently, and we want to extend to them a big CONGRATULATIONS!!

Pedialyte Trial - Day 8 (Thursday 12/11/08)

Weight 6.865 kg (15lbs, 2.2 oz)
Oral Intake 18.5 oz (woot! woot!)

Sofie had such a good day today. If you remember from yesterday I took out her NG yesterday morning. By last night it seemed like she was eating a little better, so we opted not to put it back in last night and just see how she'd do today. I think it made a huge difference for her to not get anything at all by NG. She was much hungrier today. She wanted to eat every couple of hours, and ended up taking 9 bottles today for a total of 18 1/2 ounces!! That's a new record for her.

On the downside her weight was quite a bit less today, 4 ounces less than yesterday actually, which was a big drop from one day to the next. However, a big percentage of that can be attributed to not getting the pedialyte last night and losing some water weight. I watched her carefully today for signs of dehydration. She still had 6 wet diapers and a big poopie diaper, so no real changes with any of that. Her mucus membranes were all still moist and she was again very playful and energetic all day. In fact, the last few days she seems to be feeling better than ever.

Not only is she feeling better and eating much better from the bottle, she's also doing better with solids the last week. For her afternoon snack she ate about 1 1/2 tablespoons of pureed pears. She was gulping it down and letting me shovel it in with a spoon. She helped a few times, but was more than willing to let me feed her. I was scraping the bowl at the end - something I've never had to do before. So I was really happy about that too.

One of the best things that's happened is that she actually enjoys drinking her bottles now. She doesn't have to be sleepy to take them. She wants them even when she's wide awake, and she'll look around while she's eating and play with her hair like she used to when she first came home from the NICU. She actually gets mad if you take the bottle out of her mouth before she's done. This is not just due to the Pedialyte trial. We've been working on positive associations with food and eating for months and I feel like that work is paying off now.

I gave her two biter biscuits to chew on while I was baking cookies this afternoon and they both disappeared. There's no way she could bite any of it off, let alone eat the whole thing because they're huge. I thought she had just dropped them down in her lap in the highchair, but I took her out and looked for it the first time and didn't see it, so I got her another one. A few minutes later I noticed her hanging her arm over the highchair feeding it to Gracie, so I'm pretty sure that's where the first one went too!

Even though her intake today was fabulous, we didn't want to risk her getting dehydrated, so we put her NG back in to give her some pedialyte tonight. I tried to put her old size (5 Fr) NG tube down instead of the size she's had (6 Fr). Even though it's only one size difference, it really is a big difference. The 5 is so much smaller and softer. It went down without a problem, so we're going to stick with that size for now. We're giving her a little extra pedialyte tonight to make up for last night, so hopefully it won't zap her hunger tomorrow.

Mose The Elf

Mose The Elf came last weekend to be part of the Miller Christmas Tradition. He's our Elf on the Shelf that reports back to Santa whether Sofie is finishing all of her bottles or not. Drink up, Sofie!!

Here are the rules our Elf on the Shelf must follow. Mose sits somewhere in the house in a new place each day for Sofie to find him. Sofie may talk to him, but he can't talk back to her (Santa's rules). Then each night Mose flies back to the North Pole to report to Santa on her behavior and what she wants for Christmas. In the morning he's back and sitting in a new place. Each day we read The Elf on the Shelf book. The story is really cute and I'm looking forward to Mose the Elf making his magical appearance each year during the holiday season.

Happy 9 Month Birthday!

Pedialyte Trial - Day 7 (Wednesday 12/10/08)

Weight 6.990 kg (15 lbs, 6 oz)
Oral Intake 14.5 oz

We started our day off with Sherry and Shelly, Sofie's FirstSteps OTs. They were also very pleased at her progress on the Pedialyte Trial. She's blazing new territory here!

After her therapeutic play session, which included some new exercises on a ball that was sort of like a smaller, longer exercises ball (very cool), Shelly fed her some breakfast in her high chair. I noticed her taking the spoon to feed herself more the last couple of days. She's been a fan of feeding herself with her NUK brush for a while, but now she's getting the hang of feeding herself with the spoon. She's much more willing to eat when she's in control, so we just let her do it. Yes, it's messy, but as long as she's eating, who cares?! Any way she chooses to put food in her mouth is a winner, winner chicken dinner.

I also told Sherry that it seems like Sofie is really interested in holding her bottle and trying to drink from it while she's sitting up. This would work great if it had a straw, but not so much with a regular bottle. I have had a sippy cup with a straw that I've tried with her several times over the last couple of months or so with no luck. I tried it again and still no luck, so I asked for some ideas since she's still a little young to master the straw. Sherry has used a homemade "straw bottle" (I'm not sure what to call it) to help kids learn to drink from a straw that is made of an empty honey bear with a straw inserted into it and cut off at the spout. She'll bring one for Sofie to try next week, so I'm excited to see how she reacts to it. Sounds like a good idea to me!

Sofie's been really playful again all day. So playful she had her NG barely hanging in there this morning after she woke up, so I pulled it after her morning meds to see how she'd do without it in today.

Again, she didn't take her usual morning nap. She played during OT and then took 3 ounces from her bottle afterward. Instead of falling asleep, which is what she'd usually do, she was ready to play again. I finally put her down in her pack n' play for a nap around 3:30 or so and told her it was nap time and she slept for a couple of hours. I guess I'm going to just have to start "initiating" nap times or my little play monster might just stay up all the time!

I forgot to mention yesterday that Kenny has recovered from his flu. He had a fever over 101 on Monday evening and by late Tuesday morning was feeling much better. He was back to 100% Tuesday night, and so far Sofie and I are still healthy.

Pedialyte Trial - Day 6 (Tuesday 12/9/08)

Weight 7.017 kg (15 lbs, 7 oz)
Oral Intake 13.5 oz


Our FirstSteps dietitian, Dana, came this morning to check in on Sofie. She was really thrilled at how well she's been doing so far. She didn't expect her to be taking near as much orally as she's been taking and doing so well at holding her weight.

So our question was, where do we go from here? We had kind of thought by this time, Sofie would need to go back on NG feeds to put some weight back on and we'd have to try again in a week or two. I was prepared for a huge weight loss (maybe even 9%), but so far she's only lost 1%. Sofie's doing so well, we talked about it and felt we could continue the trial for a few more days.

Sofie was really active and kind of whiney for most of the day. She wanted to go, go, go and play all day. She didn't take her usual morning nap and only napped in the afternoon for 30-45 minutes. Then she napped for another 30-45 minutes in the evening, and at 11:30 pm was still laughing and having a great time. Mommy and Daddy decided enough fun had been had for the day and just put her to bed. She did eventually fall asleep after "talking" to herself in bed for a little while. I guess she's still getting enough nutrition to keep her energy up!

With all her activities, she only ended up taking 13 1/2 ounces for the day, which was down from the previous two days, but still not too bad if you look at the big picture of progress.

Pedialyte Trial - Day 5 (Monday 12/8/08)

Weight 6.970 kg (15 lbs, 5.8 oz.)
Oral Intake 15.5 oz.

Today was a sleepy day for Mommy after working last night, and Sofie cooperated pretty well. We played and napped and she took her bottles about the same as the last couple of days. No gagging still, which is so nice to see. She took a bottle this evening while sitting up watching TV, which would have been a huge distraction for her in the past. Her intake today was up again at 15.5 oz with very little effort on my part, I must admit. I think she is definitely heading in the right direction. No matter the outcome of our trial, each bottle she takes is such a huge victory for her, considering she was refusing all bottles this time last month. I think that's just amazing progress in such a short time, with another surgery thrown in the middle.

The unfortunate news of the day is that Kenny has the flu. He's only had the flu once since I've known him and it was 6 years ago. He actually came home from work this afternoon, so I know he had to be feeling pretty lousy. He's quarantined to the guest bedroom until he feels better, so hopefully Sofie and I won't get it. He called and said he was coming home with a fever and chills, so I made him scrub in when he got here and put a mask on the nightstand for him to wear when he leaves the "sick zone." I stocked him up with fluids and cold/flu medicine and comfy clothes and blankets and haven't seen him since. He woke up once tonight and called me from his cell phone to check on Sofie. What a sweet Daddy! I hope he feels better tomorrow and Sofie doesn't get it.

Pedialyte Trial - Day 4 (Sunday 12/7/08)

Weight (Didn't weigh this morning - Mommy & Daddy were away!)
Oral Intake 16.25 oz.

Sofie had so much fun with Grandma and Grandpa last night and this morning. She woke up and took her bottle again this morning at 8:00 am for Grandma. She took 2 ounces and then wanted to play for a while. They waved at cars going by on the street out of Sofie's bedroom window and played for a bit, and then she took another 2 ounces at 9:30 before taking a short nap.

She seemed a little hungrier today, taking 2 to 4 1/2 ounces from her bottles about every 2-3 hours. Another thing I noticed today was Sofie actually got excited at the sight of her bottle. Around noon, I warmed up a bottle because she'd been kind of whiney for about 15-20 minutes. When I took her into the kitchen with me to get it, she started "talking" and smiling and kicking her feet when she saw it. She took it eagerly and took 4 ounces!

Kenny and I had a lot of fun at our party last night. The band was great and we danced all night. Thanks to RMT for another great party - we always have such a great time!!

Pedialyte Trial - Day 3 (Saturday 12/6/08)

Weight 7.115 kg (15 lbs, 11 oz.)
Oral Intake 12.5 oz

Today was a little scattered, because Kenny and I have a Christmas party to attend tonight. I came home from work this morning and slept until 11:00 am and we've all been on the run all day. Kenny had to get a suit and I had to find a dress for the party tonight. Yes, we are last minute people! Grandma Cheryl and Grandpa Kenny came up this morning to help out and to stay with Sofie tonight, because Kenny and I will be having our first night together away from Sofie. Sofie will have so much fun playing with Grandma and Grandpa this weekend!

Sofie started the day off differently today by taking a bottle first thing this morning. I think this is a big step in the right direction for her, because she's always been a morning person. She wakes up ready to play and has never really been interested in taking a bottle first thing in the morning. There's just too much playing to be done! But today she took 2 ounces for Kenny at 9:00 am and then went back to playing afterward. This is also the first time she's really wanted a bottle while she was wide awake and didn't go to sleep at the end of it.

Even though the volume she took was about the same, her behavior began to change today. First she took the bottle while awake and stayed awake afterward. Secondly, she didn't gag with any of her bottles today. I think we may be starting to make some progress!

Pedialyte Trial - Day 2 (Friday 12/5/08)

Weight 7.140 kg (15 lbs, 11.8 oz)
Oral Intake 12 oz.

Well Sofie certainly woke up well hydrated - in a wet bed. I think her weight today is more of a reflection of her hydration status than a true weight, but hey, I'll take it. She took 5 bottles again today, anywhere from 1 1/2 to 4 hours apart, and took 1 oz to 4 oz from each one.

Today was basically the same as yesterday. She seems to only want to take a bottle after she's done playing and is getting ready for a nap. She takes the bottle and pulls it to her mouth when she's sleepy and then falls asleep when she's done. She is still gagging occasionally when she's getting started with her bottles. She'll pull the bottle into her mouth and suck a few times and then gag. I'll take the bottle out for a few seconds, and she just keeps trying until she can get going. Usually once she gets going with it, she doesn't gag anymore. The gagging is part of her oral aversion, and she's been doing it for quite a while, maybe a couple of months. It seems to be happening less often over the last few weeks than before, as she's been getting better and better with the bottle. Hoping for continued improvement over the next few weeks!

Pedialyte Trial - Day 1 (Thursday 12/4/08)

Day 1 of our trial went really well!

Weight 7.090 kg (15 lbs, 10 oz)
Oral Intake 12 oz.

To recap, basically up to this point we worked on fattening her up to keep her healthy and get her through surgery and the healing process (Phase 1 of Peetie Unplugged).

Then we spaced her feeds out during the day and didn't push her limit on volume quite as much. Her daily intake went down from 32 ounces per day to 28-30 ounces per day. This allowed her to tolerate her feeds better and space them out so she could begin to feel hungry in between them. This got her to start taking the bottle again in minimal amounts. (Phase 2 of Peetie Unplugged). She was 100% NG fed a little over 2 weeks ago.

We are now nearing the end of Phase 2, which is working to encourage oral feeding by bringing back her hunger mechanism. We are getting a bit more aggressive now and are doing a Pedialyte trial. We'll do this trial for a few days and then reevaluate our plan with the help of Sofie's Dietitian, Dana.

The Pedialyte trial is simply bottle feeding her milk (same thing she's been getting) during the day based on her hunger cues. We don't give any NG supplementation during the day. Based on her current weight, she requires 23 ounces of fluid to stay hydrated, so at night we give her the remainder of the 23 ounces that she hasn't taken during the day in the form of Pedialyte through the NG on the feeding pump at a continuous rate of 60cc/hr. This way she stays adequately hydrated with regard to fluid and electrolytes, but the Pedialyte won't fill her up and zap her hunger like a night feeding of milk would.

We can do this for a while from a nutritional standpoint without causing any harm. She is going to lose weight though. From what I've read the average weight loss is around 9%, up to 15%. We are prepared for the fact that during this process she may lose a pound or more. That's why we worked to fatten her up before we started, so that she can still lose that weight and not fall below the growth curve that she's been on all along.

I truly believe in the hunger mechanism and it's extinction in tube fed infants. There is a lot that goes into this theory and it's not widely accepted, but it makes perfect sense to me and there's really no reason not to try it at this point.

Today was Day 1 of the Pedialyte Trial, and I told myself that if she took 6 ounces total from the bottle for the day I would be okay with that. She took 12 ounces! I feel like that was excellent for the first day, given the fact that today wasn't a whole lot different for her yet. The hunger mechanism takes quite a while to return (a couple of weeks or more). So tonight she's getting 11 ounces of Pedialyte through the NG on her feeding pump.

Tomorrow may be a bit more rocky for her, since tonight will be her first night without a continuous milk feeding in almost 2 months (with the exception of the days surrounding her surgery). Until she recognizes that she is hungry and that she needs to eat to satisfy that hunger, I don't think she'll understand it when she gets hungry. She'll probably just get really irritable until she figures out what to do about it. We just need to support her and comfort her and offer her food in a nonstressful way until it clicks for her, but I do think it will happen.

Feeding her based on hunger cues is really difficult when even she doesn't realize she's hungry. I don't know what her hunger cues are! Basically I have a bottle at hand all the time and when she seems fussy or insistant on something or is sucking more aggressively on her binkie, I offer her the bottle. Today it worked pretty well, and she took 2-3 1/2 ounces each feeding. She took 5 feedings, anywhere from 1 1/2 hours to 5 hours apart.

I don't think she'll ever eat on a regular schedule or the daily volume that the clinic says she should be taking. She will tell us what her needs are. But to me, a healthy, happy baby that eats orally with no feeding issues, is much better than a baby that is tube fed for years only to be a few points higher on the growth curve. You have to look at the big picture and all the physical and psychological things that go along with this feeding issue.

I look back to June when she came home from the NICU and was 100% orally fed. Just a couple of weeks ago she was 100% NG fed. We made her that way!!! And we can get her back to oral feeding.

Peanut Butter Jelly Time

Make a Smilebox greeting

We were so excited tonight when Sofie took her full 5 ounces by bottle!!!!! She hasn't done this since sometime in July. Her full feedings are between 5 and 6 ounces now, so this was the first time in months we haven't had to use the NG at all for a feeding. I hope it wasn't a fluke and she remembers how to do this in a couple of days when we start trying to wean the NG aggressively!!!

Her cold is really getting a lot better. I think it will be completely gone in a couple of days, so we're planning to start her big NG weaning trial on Thursday. I'm nervous, but very excited to really give it a try.

Sofie had a surgery clinic follow up appointment with Dr. S.P. today. He thought she was doing really well and will see her again in mid January unless she starts having problems between now and then.

Since we were already there, we stopped by the OT clinic to see if Laura, our CMH OT, had any cancellations so we could get in to see her earlier. She was able to see us right then, so Sofie had her feeding therapy appointment and we were heading home by 10:20 am. It was so nice to not have to load up again this afternoon and go back. I'm glad Laura could squeeze us in early.

**new update**

Since I started writing this, I stopped to give Sofie her bedtime bottle and she took 4 ounces! Good girl, Sofie!!

Sofie's 1st Thanksgiving

Make a Smilebox scrapbook

Sofie had a good time visiting her Grandmas and Grandpas' Houses last week. It was her very first trip to visit them and she had a lot of fun. We left Monday afternoon and Sofie slept through the entire 2 hour drive. We got to Grandma Linda and Grandpa Steve's house around 7:30 Monday night.

Tuesday we spent the day at Grandma Cheryl and Grandpa Kenny's house. Sofie had a "Great" time playing and getting visits from her Great-Aunt Karen, Great-Aunt Kay, Great-Uncle Rick, Great-Grandpa Tucker, and honorary Great-Grandma Wanda.

Wednesday we spent the day with Grandma Linda and Grandpa Steve and Sofie helped Mommy and Grandma bake for Thanksgiving. Great-Grandpa Troxel even came over to visit for a while.

Sofie was loving all the attention! But she did miss her Daddy. Kenny, Gracie, and Lola came down Thursday morning and she was so excited to see them I thought she was going to jump out of my arms!

Thursday we enjoyed two very yummy Thanksgiving dinners. Sofie's favorites were gravy and cranberry sauce. She also loved the mashed potatoes and sweet potatoes. She is getting better again with mealtimes and taking food off the spoon. She had started to avoid anything with food on it, but now she's dipping her NUK brush in food and eating off of it and off the spoon again (a little bit, but better than nothing!)

We really enjoyed Sofie's first vacation and seeing our family. Everything went really smoothly with all of Sofie's equipment and can you believe we didn't forget anything?! Shortly after we arrived I did cave in and decide that Sofie wasn't just having a reaction to the RSV shot, and that she actually does have her first cold. Then I stressed about what her O2 sat was the whole time. Of course I brought my stethoscope and the rest of her little medical kit we put together. She really seemed just fine other than a runny nose and a slight cough. Her lungs always sounded clear and she never had a fever.

But then I got worried, because she started throwing up again after feedings. She hadn't thrown up since her surgery, and I was really worried she may have reherniated again. But she's also acting like she's teething again. Her bottom gums are swollen and she's been a drool factory. That combined with the cold symptoms had her coughing and once she started coughing, sometimes she'd gag and throw up. But the way she is throwing up now is different from before her surgery. It didn't seem related to abdominal distention or discomfort, but just related to her coughing and gagging.

Friday morning we rushed back home and took her to Dr. Y.'s office to make sure everything was okay. I wanted to make sure her ears and throat looked okay and have them check her O2 sat. We made it just in time to get her in during urgent care hours without an appointment and the nurse practitioner saw her. She checked her over carefully and said she just has an upper respiratory infection (A.K.A. a common cold). Her O2 sat was 95% - not bad with a nose full of snot (sorry, gross.) So she's doing pretty well getting through her first cold without any major issues.

Sofie slept for the 2 hour drive back home again, but Mommy had to drive. So by the time we made it back up here, got home from the Dr.'s office and unpacked, I only got about 30 minutes of sleep before work Friday night. But by a stroke of luck, I was able to go home early at 11:00 pm, so I got to sleep until 5:30!!

I was so glad to get some sleep because Saturday morning we headed out to tailgate at the KU vs. MU football game at 6:30 am. Here are some pics.

Since Sofie had had a cold all week, I decided to go home after we tailgated and watch the game at home with Sofie and Grandma Linda and Grandpa Steve. We ordered pizza and I must admit I wasn't too sad to be watching the game from my couch under my warm blanket. It was a good game though and KU won!! Rock Chalk!

Sunday we had planned to start aggressively weaning the NG by bottle feeding based solely on Sofie's hunger cues during the day and not using the NG to supplement at all. Then at night we'll give her enough pedialyte by NG to make sure she stays hydrated. Since Sofie has a cold, we decided to postpone the big NG trial (last part of phase 2 of Peetie Unplugged). We want to make sure she is fully recovered from her cold before we start weaning the NG. We don't want her to be weakened and then develop pneumonia. Plus we want her to be at her peak physically, so we are setting her up to succeed.

She should be fully recovered in a few days, and then we can really get aggressive with the weaning process. I've seen so much improvement over the last couple of weeks though. Spacing her feedings out so she gets hungry has really made a difference. She went from refusing all bottles to taking anywhere from 1-4 ounces from the bottle at each feeding. She still has a long way to go, but I'm so encouraged by the improvement she's made so far. She's also gained almost a pound in the last couple weeks. She weighed 15 lbs, 11 oz this morning!

Her cold is much better today, and I haven't noticed her coughing much at all - just once today. And no more throwing up the last couple of days. I'm hoping she was just throwing up because of her cold symptoms and all the extra drooling that was gagging her. She has a surgery follow-up visit tomorrow with Dr. S.P., so we'll see what he thinks.

We also have an OT appointment at Children's tomorrow afternoon. Our appointments are really spaced out, so unfortunately we'll have to make two trips to Children's tomorrow.

The Thanksgiving Turkey brought Sofie her very own highchair last week. We put it together this weekend and she got to use it for the first time today. She looks like such a big girl! It is easier to feed her in it than in her Bumbo seat in the middle of the table. The Bumbo worked well when she was smaller, but she was ready for her big girl chair. Both of Sofie's OT's were really encouraging us to get a highchair, which is a good thing or we might have still been feeding her in the Bumbo in the middle of the table at age 3!