She's continuing to make progress with feedings. We celebrated 2 weeks without the NG tube yesterday. It really seems like it's been much longer. Now that we're tube free, it's as if we've always been that way.
Sofie's consistently taking 25 oz per day for the last few days and is maintaining her weight at 15-8 instead of 15-6. She's taking bigger bottles now too. She almost always takes at least 3 oz and is averaging 4 to 4 1/2 oz at each bottle. This evening she even took a 5 oz bottle! So far she hasn't taken more than 25 oz for the day, but today she may end up setting a new record.
Sofie and I had planned a little shopping trip today, but it was cold and snowy so we had a nap day instead. It was so nice!
Now I'm up doing my usual late night cleaning and laundry, waiting until the 2:00 am feeding. Kenny and I usually split the night feedings. I usually stay up for the 2:00 am feeding and then I get to sleep until 8:00 or so and he goes to bed earlier and gets up to do the 5:30 am feeding. Last night I decided to go to bed early (at midnight) and get up for the 2:00. But I accidentally slept through it, because once I go to sleep I'm pretty much in a coma. I thought I'd sleep lighter with Kenny gone, but apparently not. So tonight I'm setting 3 alarms (cuz 2 obviously weren't enough) and I'm hiding one across the room so I have to get up and find it when it goes off.
We just feel that we have a different philosophy than Dr. R. when it comes to Sofie's care. I do think she's a good doctor, we just don't agree on some fundamental issues when it comes to feeding and growth. Our experience with the clinic has been really disappointing, and at this point we feel that Sofie's issues can be handled just fine by her regular pediatrician. We are scheduled to see him again on February 5th. I plan on discussing all of this in more detail with him then, and if he's comfortable taking over all of Sofie's care, then we will probably stop going to the Special Care Clinic.
I've been really nervous for this appointment today, since the last one went so badly. I just wasn't looking forward to another bad reaction when we are so very happy with Sofie's progress. Dr. R. and I have different beliefs when it comes to feeding issues and I know that I'm not going to convince her to agree with me anymore than she's going to convince me to agree with her. We'll just have to agree to disagree and that makes for uncomfortable appointments.
Unfortunately, Dr. R. was sick today and had to cancel all her appointments. They haven't called me to reschedule yet, but I'm going to try to reschedule after February 5th, so we can see Dr. Y. prior to our next appointment with Dr. R. I have to admit I was relieved to not be going to the clinic today, but I wish it were under different circumstances.
Sofie is continuing to eat really well, between 22 and 25 ounces per day since we started the Periactin. She's holding her weight steady at around 15 lbs, 6 oz. She's slowly increasing her total daily volume and also the amount she takes with each bottle. She's gone from taking 1 - 2 1/2 oz per bottle to 3 -4 oz per bottle and is eating about 7 times per day. She tends to start out very slowly early in the day and then eat with more frequency as the day goes on.
She's still highly distractable when eating. We feed her in a quiet area with as little going on as possible. Something as small as a phone ringing or a car horn honking outside will stop her feeding. It doesn't take much at all to distract her and once she decides she's done eating, she's done with that feeding. It's extremely difficult to feed her in a public place unless she's really sleepy.
She's continuing to do well with solids, but it's still a work in progress. I think that's typical of any baby though. She usually at least takes a few bites at each meal, up to 2 servings (4-6 T.) at each meal, two to three meals per day. Lately it's been brunch and dinner.
It's just so nice to be free of all the tubes! It's so much easier getting out of the house without the oxygen tank and the feeding pump. To just pick her up and put her in the car seems like such a simple thing, but after you've been dragging around medical equipment for 7 months it's a wonderful feeling of freedom. I can actually just carry her inside somewhere now! Or outside for that matter. We really can just run to the grocery store. It's those simple day to day things that are so nice to be able to do now.
And we're enjoying the freedom of simply walking around the house with her. There were some rooms in the house she'd never been in, because her oxygen tubing didn't stretch that far. I can carry her into the kitchen with me now when I fix a bottle instead of having to put her down in her Bumbo or in the Pack n' Play because her tubing was too hard to maneuver around all the furniture and over the stairs into the kitchen.
We took her out to eat the other day and it was nice to just carry her in and put her in a highchair. I guess I had gotten used to people staring at her with the oxygen and the NG tube and didn't notice it, but I do notice people NOT staring at her now. We went to the grocery store tonight and I had her in the sling just walking around with a basket. So great! As I was walking I thought about how "normal" we looked and how no one would ever know how much she's been through. Then I thought of how envious I would have been of us if I'd seen us this time last year.
It was all squared away early last fall, and then - surprise! A changing table showed up at the end of December. We waited quite a while to open it and put it together until we knew for sure it wasn't a mistake. The company sent us our changing table for free! Check it out - and here's a plug for Fawn & Forest for their generosity.
Sofie had OT at Children's Tuesday with Laura. We hadn't seen her since the same day we last saw Dr. R. (which was the disaster appointment during which I got yelled at for our NG weaning method.) I filled Laura in because she hadn't yet read the note from our last visit. She was really surprised at Dr. R.'s reaction and wished us luck at our appointment later this week.
Laura was very impressed with Sofie's improvement in the last month. She ate all of the food that I brought for her, which was just a serving of bananas mixed with rice cereal. We have been seeing Laura for outpatient OT every other week, but with Sofie's feeding progress, she said we only need to see her once per month now and only scheduled two more months.
After that we may no longer need OT through Children's, which would be nice to eliminate one more appointment, especially since I feel like it's just a repeat of what we've already been doing with Sherry for months. I like Laura, but I can't really justify continuing OT with Children's when we have everything we need seeing Sherry here at home. Plus Laura only does feeding therapy and Sherry does all of Sofie's occupational therapy.
Sofie and I also ran into Shelly in the outpatient OT clinic Tuesday. Shelly was our OT student who worked with Sherry for a couple of months. She also works in the clinic at Children's and just happened to be working when we came in. It was great to see you Shelly, hopefully we'll run into you again!
I feel such a sense of accomplishment for her that we stepped up and did things our own way. We did what we truly believed was the best thing for her, and by doing so we brought her from being 100% tube fed to 100% PO fed in just 36 days. And two weeks in the middle were rocky just due to med changes. I won't say we're done with the NG forever for quite a while. I don't want to jinx it. But I can say that at this point, Peetie Unplugged has been a success!
When you're in the moment, it can seem like time and progress is really dragging and there were LOTS of frustrating days in there, but when I see that actually written here..."100% tube fed to 100% PO fed in 36 days"...it really feels phenomenal. It's such a huge victory for all of us as a family. And we couldn't have done it without the awesome support of Dana, Sherry, and Dr. Y. Thank you!!
We first started talking about weaning her NG by hunger trial late in the summer, but we wanted to get her through any potential surgery first. Kinley's mom and I talked about it quite a bit, and I can't say how much it helps to have a buddy to go through something like this with. Back in October we talked about having our girls NG free for Christmas and we weren't far off the mark. I'm so happy for you guys too - congrats Kinley on being tube free!
Apria will come pick up the larger tanks and we'll keep the small, travel-sized tank in case of emergency for 30 days. Sofie will still need to be on her apnea monitor at night or if she's napping without being watched. We're also supposed to put her on the apnea monitor when traveling in the car - not sure why, because she had to pass her carseat trial before she was discharged from the NICU. I guess maybe just because they assume we might not be watching her closely while we're driving.
I will not miss having all those big oxygen tanks and tubing strung through our house! It's going to be so nice to get rid of all that stuff. We are actually glad to keep using the apnea monitor, because we rarely have any problems with it, and it does give us a peace of mind at night that we know she's still breathing in there. Of course we still check on her regularly, but we don't have those moments of panic if we sleep in later than usual and she's still quietly sleeping in her bed. I will kind of miss the apnea monitor when it's gone for that reason.
Taking Sofie off her oxygen has been a LONG timing coming, and I'm so happy to have that hurdle behind us. We got the order for her to trial off the oxygen on December 17th. We didn't get her sat monitor to start the trial until December 31st. Then it didn't work and it burned her. We waited 5 days to get a replacement, which worked better, but was still a major pain and we had to watch it and adjust it constantly. Oh, and the second one burned her as well. Yeah, you read that right. So we only did the trial the minimum time we absolutely had to do it for her to pass. Apria picked the monitor up to send the results to Dr. R. on Monday of last week (the 12th), and today we got the order to discontinue oxygen. What a bunch of hoops to jump through! But I'm glad it's all done now, and we don't have to worry about it anymore.
No more O2 for Sofie!!!!!!!!!!!!!!!!!!!!!!
Day #1 of our busy, busy week steamrolled right on through. We were everywhere today. It was hectic, but we had time to stop by and visit some friends this afternoon. It was a welcome change to our current "hermit" lifestyle during this cold/flu season!
Sofie also got her 3rd Synagis (RSV antibody) shot today. She's still barely riding the line for needing 1 shot vs. 2 shots each time. The dose is based on weight and if she gains a couple more ounces, she'll need 2 shots next time because the dose will be too big for just one injection. Sofie is such a trooper with her shots. She always gives the big, breath holding cry when she gets the shot, but then she's quick over it and on with her day. She's such a tough little sweetie pie!
She's her usual playful, very active self. She's all over the place rolling around, sitting up, laying down, etc. She's getting so close to crawling. I was taking some pictures of her a couple days ago and caught her trying to get up on all fours. Of course she only does this kind of thing in perilous places, like here on the edge of the couch. Check out these pictures.
She's added lots of consonants and vowels to her vocabulary and says different sounds together now instead of repeating the same thing. Like instead of dadadada, she says dado yabala oh. Something like that. I can't really write "Sofie Speak" very well! I'd say her language skills and vocabulary have easily quadrupled in the last month.
She's all over the place and VERY handsy with everything within reach (and everything you think is out of reach). She grabs absolutely everything, which is making it really hard to give her baths in the sink. I really need to dig out the tub toys so she'll have something to play with.
She started trying to clap when she was around 7 1/2 months old I think, but she'd clap her hands together with her fists closed. Since the week of Christmas she claps with her hands open and actually makes the clapping sound and loves it, so she claps at everything now. It has replaced waving as her new favorite skill. The other night she somehow managed to balance on her bottom while sitting halfway up and holding her ankles so she could clap her feet together. Squirrel.
It seems like she's always learning to do new things, and it's so much fun to watch her. Her favorite thing to do is still dancing though. She dances all the time - even to commercials. She was a big fan of Jack's piano playing, and I especially liked his accompanying dance moves!
We have a very busy week ahead of us with 7 appointments between the two of us, but nothing terribly exciting (I hope).
Overall it went very well. Dr. S.P. said that unless Sofie has any problems, he doesn't need to see her again for 6 months.
One thing I asked about while we were there was her pectus. Sofie does have pectus excavatum, and I haven't mentioned it here very often, because it hasn't really been of concern. Pectus excavatum is where the sternum of the chest is sunken in. It can happen for several different reasons, but in CDH kids pectus is quite common due to the tension on the diaphragm from the way it formed and from the surgical repair.
Sofie's pectus wasn't evident until after she was extubated in the NICU and most of her swelling had gone down. I noticed in December that the lower margin of her rib cage seemed to be protruding more. As the sternum sinks in the bottom of the rib cage flares out from the tension. You can see how her ribs flare out in this photo. It was actually when I was looking at this photo that I noticed it, because it's usually not that noticeable. The position she was in just happened to show how her ribs flare out really well.
I asked Dr. S.P. if this would get better as she gets bigger, and he said it would most likely get worse. He said that it's likely she may need surgical correction and usually they like to do that around age 13 or 14, toward the end of her major growth period.
The surgical correction involves inserting a rod across her chest underneath the sternum to help push it back out, and in response, her rib flaring will reverse as well. They leave the rod in for about 3 years and then take it out. As long as she doesn't have a big growth spurt right after it's removed, the pectus is usually resolved.
So at this point we anticipate another surgery for Sofie in her early teenage years. But who knows what 13 or 14 years of medical advances will bring. Maybe there will be a whole new method of correction for pectus by then. If she does need the surgery, it sounds relatively minor compared to what she's already been through.
The tension on the diaphragm that causes the pectus can also cause scoliosis, so that's something we'll be watching for as well as she continues to grow.
We were surprised and happy to notice a change the very next day. After bouncing between 5 and 13 ounces per day on oral intake, this is what this past week looked like:
Thursday (restarted Prilosec at bedtime) - 7 oz.
Friday - 15 1/2 oz.
Saturday - 19 1/2 oz.
Sunday - 21 oz.
Monday - 17 oz.
Tuesday - 21 oz.
Wednesday - 18 oz.
Thursday - 20 oz.
So the Prilosec got her back on track for the volume she had been taking prior to the changes we made with her reflux meds. Apparently she does have reflux and it does bother her quite a bit, even though she doesn't show any signs of it other than not wanting to eat.
The little stinker also pulled out her NG tube on Monday, and since she's been thisclose to her target hydration volume of 23 oz/day, we just left out the NG this week to see how she'd do. She's done well, but seems to be at a plateau right around 20 oz for the day, and although that's MUCH better than last week, it's still not enough to keep her from continuing to lose weight.
Her weight bottomed out at 15 lbs even and was hovering there all last week. After eating better this week she was slowly working back to 15-1, 15-2, but still barely hanging on. I talked to Dr. Y. on Thursday and told him Dana (Sofie's dietitian) and I had talked about starting Sofie on the Periactin (appetite stimulant) and thought that maybe now was the time to start it. He agreed that she just needs that last little boost.
Dr. Y. said we could expect to see her appetite start to increase about 4 days after we start the Periactin and that usually it causes around a 50% increase. Since she's taking about 20 oz per day by mouth, it's possible that she may increase that volume to 30 oz. per day. I told him I'd be giddy if it worked that well!
He said he usually keeps kids on it for 2-3 months straight and that's generally enough time to "retrain" the brain that the increased volume is what they need to eat to get full. He said then we'd try to stop the Periactin for a couple of weeks and see how she does without it. If her appetite were to decrease, he'd probably restart it for another 2-3 months. He said he's never had a patient on it for longer than 6 months.
The Periactin is an antihistamine that has the side effect of increased appetite. Using it as an appetite stimulant is an "off label" use, but many medications are used for "off label" purposes. Other common side effects are the same as any other antihistamine (like Benadryl) - dry mucous membranes (mouth, lips, eyes, etc.) and drowsiness are the most common.
We started the Periactin last night (Thursday night). Today she took two monster naps, and I thought she seemed a little sleepier than usual, but surely it wouldn't work that fast? She was also eating more today, even by 10:00 am this morning I noticed a difference. I weighed her this afternoon and she had gained 6 oz. since yesterday. I reweighed her several times and was looking under the scale like there might be little lead weights hanging from it. Could this be working already?!?
Day 1 of Periactin, Sofie ended up taking 25 oz.!!! This is a new record for her. Right now she's still tube free, and I hope it continues!
I always thought that if I suspected a recurrence, a quick xray could put my mind at ease, but now I won't ever trust an xray again if Sofie is acting strangely. If I'm ever in doubt about whether or not Sofie may have experienced a recurrence that's causing a problem, I'll discuss it with her surgeon and request a CT.
That being said, I want to be sure to make a very important point about recurrences. I don't want to freak parents out by posting these pictures. I just want to show how much more Sofie's CT showed than her xray. Recurrences are usually not considered an emergency. A recurrence is really only considered an emergency if it's causing an immediate and possibly life threatening problem, such as respiratory distress or bowel obstruction. Often times surgeons will even prefer to wait to repair a recurrence if it's not causing any immediate problems.
The first picture is Sofie's xray from her last recurrence. Her left lung shows some partial collapse by the white hazy look toward the top, whereas the second xray from this week shows the left lung well inflated. Besides that there aren't too many other obvious differences.
The next two pictures are from Sofie's CT scan just before her last surgery. Compare the xray with the CT. The first CT picture is set for lung tissue, so it shows her lungs and airway well. The second CT picture is set for abdominal tissue, so it shows her stomach and bowels better. I've shaded them both, so they're easier to see. Her entire stomach is in her chest and there is bowel up to her clavicle. Her left lung is almost completely collapsed and her airway is grossly shifted to the right, and none of this is shown on xray.
Sofie has her chest xray and surgical follow up appointment today, so I'll post the details from that later. I'm expecting good results to put my mind at ease!
Her sensory issues are SO much better since we started working with Sherry. Lots of CDH kids and other babies that have been in the NICU and had lots of medical intervention have sensory issues, especially with their hands. Many of these babies won't tolerate messy hands - finger paints, food, etc. It REALLY bothers them to the extreme.
Sherry says she thinks there's a connection between sensory issues of the hands and oral aversion. There's a connection between the palms of the hands and the gag reflex related to acupressure points. Google acupressure+gag. You'll find some interesting stuff! Here's one article. This stuff is a reach for some of us "Westerners" to grasp, but there is some validity to it. I remember seeing a doula with one of laboring patients massage pressure points on her feet to stimulate contractions and it did work - to an extent. There are a lot of tools that Western Medicine doesn't employ. Stay open minded!
(Sorry, I'm thinking "on paper" here, and it's long, so if you want to skip to the last two paragraphs you'll get all the important parts.)
1) Another reherniation - always a possibility, unfortunately. The good thing is that Sofie already has a surgery clinic follow up scheduled with Dr. S.P. on Tuesday of next week, with a chest xray just prior to the appt. If the chest xray is questionable, or just because she's been sneaky before, I may request a CT just to put my mind at ease that we aren't dealing with another recurrence. Her xrays were so deceiving before her last surgery. She'd been reherniated for a long time and had several xrays that didn't show stomach or bowel herniated, but the CT showed everything and what a difference! Lots of bowel and her entire stomach had been herniated into her chest and wasn't seen on xray. Her xrays are now used for teaching purposes at Children's to show how deceiving an xray can be. It's not a good thing to be so bizarre that you're used for teaching.
Things that make me think she could have another recurrence:
- Pain - When we visited family at Thanksgiving we took her jumper, which she LOVES jumping in. She can really go to town in it. The first half of the week she'd jump like crazy in it until we'd take her out after 10-15 minutes to keep her from burning too many calories. Then later in the week when we'd put her in it, she'd start jumping and cry out sometimes like she was in pain. She'd keep jumping, but not as wildly as before, so we'd take her out. I thought maybe she'd just jumped too much in it earlier in the week and either her muscles were sore or maybe she tweaked a joint somewhere? But maybe she was hurting somewhere internally from another recurrence starting? Could it be the recurrence started then, like the margin of diaphragm tore away, but then nothing actually herniated through until recently, causing her to start refusing the bottle?
- Throwing up - Before her most recent surgery, she would throw up after NG feeds. Thanksgiving week she was still getting NG feeds and she started throwing up after them again. (She hadn't thrown up since her surgery.) She also had a cold at that time and was drooling quite a bit. It's not uncommon for kids to cough, gag, or throw up when they're teething/drooling a lot or when they have a cold with postnasal drip - we attributed the throwing up to these things, but any new throwing up is always a red flag for us, since her only symptoms of reherniation have been throwing up after NG feeds and refusing to eat. After that week she stopped throwing up, but we also stopped giving NG feeds when we started the NG weaning the first week of December. Last week when we did a couple of days of NG feeds again, she threw up after one of them (a 6 oz feeding). But she could have just thrown up because her stomach has shrunk over the last month and 6 oz was too much for her.
- Diminished lung sounds - Her lung sounds are diminished over her left lower lobe. But they kind of always are, because that lung is hypoplastic and dysplastic. But there hasn't been a change in her lung sounds since surgery, which is reassuring.
- Refusing the bottle - She first started refusing the bottle back in July when she had her first recurrence.
Things that make me think she hasn't had another recurrence:
- No change in lung sounds.
- No change in respiratory status or work of breathing.
- Consistently sats 95-97% on room air, sometimes 100% on room air. (But remember she was satting 98% with her first recurrence in July, and her left lung was completely collapsed. She's a toughy.)
- She can tolerate a 6 oz. bolus of Pedialyte over 15-20 minutes and has never seemed uncomfortable or distended, and has never thrown up after an NG Pedialyte bolus. In theory, wouldn't 6 oz of anything make her throw up if reherniation were the issue?
2) Air Hunger - Does she work too hard to breathe and eat and need supplemental oxygen for feedings? Her PO feeding started going downhill the weekend after Christmas. So what changed that week? Two things. One being we took her off oxygen, since we got our own sat monitor. To test this theory I put her back on oxygen for a full day or so and those days were actually her very worst days for PO feeding, so I ruled out air hunger as the cause for her decline.
3) Reflux. The only other thing we changed the week of Christmas was her meds. We took her off Prilosec and have just been giving her Zantac. It could be her reflux is worse than we thought. Even though she's not arching or throwing up or showing any signs of pain when eating or after she eats, she could still be refluxing into her lower esophagus and having pain. Remember she's a toughy and doesn't always show when she's hurting. She was reherniated from July-November and people always remarked how happy she was when they saw her. She very rarely cries, but I can't imagine it feels too awesome to have your diaphragm tear away and your stomach flipped up into your chest. I noticed when we had her on the continuous sat monitor this week that when she eats her heart rate goes way up to 160's-170's. It's usually around 110. Is she in pain when she's eating because she's refluxing? She'll usually only take around 2 to 2 1/2 ounces at each feeding, even when she was doing really well with the bottle. Could that be the point at which she starts to reflux, so she stops? Or is it because her stomach has shrunk over the last month and it only takes that amount for her to start to feel full? Since this is the only other thing besides taking off the oxygen that we changed, I'm strongly leaning toward reflux as the culprit.
4) Stress related to aversion. Is she stressed when she eats because of her psychological aversion to the bottle? Her aversion started when she was aspirating. Is she still nervous about aspirating when she's eating? She has always been a noisy eater, clicking and smacking after every suck. She has a high palate due to being intubated for so long and seems to still have a little trouble organizing her oromotor skills at the back of her mouth when drinking from the bottle. She also has a short frenulum. Short frenulum+high palate+history of aspiration...I can see why she might be stressed and working extra hard. Does she still have so many negative associations with eating and pain from when she first reherniated, that she's stressed about the anticipation of pain when she eats? She does seem stressed sometimes when she's eating and "plays" with her hair, sometimes pulling it. Could be stress related to pain from reflux.
5) Finally hungry, but not hungry enough. I definitely think her hunger mechanism is returning. She wakes up now every night around 1:00 am for a bottle. She never did this before. She also gets whiny during the day when she's hungry, and never used to before we started weaning the NG. She's definitely making the hunger connection. Since we abandoned the old plan of NG feeds Q 3 hours last week, she is much better about wanting the bottle again. The last couple of days she seems like she's back to having a regular hunger cycle, and when she gets hungry she wants the bottle, pulls it to her mouth, and takes her 2 ounces. She hasn't fought the bottle once since Tuesday. So she does get hungry and she does eat, just not very much. Why? Stomach is small so she gets full on a small amount? Refluxing so she can't tolerate a larger amount? When we saw Dr. Y. in December he said if she was struggling with feeding we could consider an appetite stimulant. Dana had the same idea. They both suggested Periactin (cyproheptadine). It's an antihistamine with a side effect of increasing appetite. It's used for this purpose in patients with cancer and anorexia. Dr. Y. said he's used it with several of his patients. My main concern was that if it did work and then we stopped it, would she have a rebound effect? Both Dr. Y. and Dana said they've never observed a rebound effect with it.
So after all that discussion, we decided on this plan of action: We think reflux is the culprit and have decided to restart her Prilosec. I started it last night (Thursday). Dr. Y. said to give it 5-7 days to see if it helps. Then we'll most likely start her on Periactin, the appetite stimulant to encourage her to start chowing down and get used to eating larger amounts. We think she needs both, but why encourage her to eat more until her reflux is under control - that's just mean. And if we start both at the same time, we can't evaluate how each of them helped. So it's Prilosec for a week, then we'll check in with Dr. Y. before starting the Periactin. Sofie will also see Dr. S.P. for a surgical follow up and xray on Tuesday to rule out any issues with recurrence.
**Oxygen Update** The trial went well with the sat monitor from Apria. They'll pick it up on Monday, download all the recorded info, send it to Dr. R. at the Special Care Clinic, and then she'll decide if Sofie can officially come off oxygen. In the meantime she's still on oxygen until we get the order to discontinue it.
Sofie's 1st Christmas Album
Last Saturday Sofie's main man, Lucas, came over to watch the KU game. They were so cute in their KU gear! Sofie kept trying to put the moves on him by holding his hand (I prefer the more innocent explanation of her trying to show him how to Wave the Wheat). But then decided she'd rather steal his awesome shoes instead.
Kenny came home from work at 6:30 and gave me a big pep talk. He also did laundry and took care of Sofie all night. Seriously, where did I find this guy? He offered her a bottle at 7:00. She took 3 ounces while awake and was willing and happy to take it! In fact she was well on her way to taking the whole 4 oz until Gracie starting barking and scared the begeezes out of her. She took another 2.5 for Kenny at 9:30 as she was falling asleep and then woke up hungry for me at 1:30 am and took 3 ounces quickly and easily. Maybe not all hope is lost.