Also today, besides the three vomits... We played in water beads and ate some ramen soup. I really think that the water beads helped prepare her for the soup!
At first Whitney was extremely nervous about what was in her sink. She wouldn't even put her feet in it! It was kinda funny how she had her feet at the very tip of inside the sink. Eventually I got her feet in it, just pretending to bounce on the beads. Then I moved up to putting them on her legs. And the her arms and hands. Whitney then decided it was safe to grab them! I put her whole body in the sink so she could reach them better but she was very nervous again. Then we started scooping them up and pouring them out! It was fun!
After the water bead play, I made some Ramen Soup, even though I was a little late getting her meal started. I thought that maybe after all that sensory play, she'd be more comfortable playing in the soup. It worked! First time in a while she actually took the spoon on her own and feed her self some bites! She was very focused and quiet. Maybe she was also a little hungry since she threw up her last two meals!? I was so proud of her! And she didn't even ask for bubbles (her reward)! Any ways, most of it ended up on her chair and according to her throw up two hours later, she only swallowed about 10 pieces. So enjoy the videos of her eating because I'm sure it won't happen anytime soon again!
Tubie can do anything! But when they throw up twice a day, the parent is very hesitant to let them do anything. Don't run to fast after a meal, don't spin in circles right after a meal, don't eat or drink anything right after a meal, don't get upset or throw a tantrum after a meal, don't laugh to hard after a meal, don't crawl up the stairs after a meal, and don't burp after a meal, don't go for a car ride after a meal, don't take a bath right after a meal. ...... All these things can and usually do result in vomit. Sometimes, she's still in her high chair doing nothing and she'll still vomit after a meal! Sorry for the blah post but that's ALL I can really think about. And of course the GI nurse was all like, Yeah, it could be a motilty delay, and yeah it could be an overly sensitive gut, and yeah we can only increase her bethanechol by .2mls, and yeah we don't do anything to help... And the feeding therapist is always reccomending doing different schedules that I've already tried a million times. And before a blenderized diet we were just using formula or the Goat milk and everyone was all like, she won't vomit any more on a BD because it's real food and it'll be heavier in her stomach and it'll help her eat better ......... Again, Sorry for the complaining post.
anyways, here's the part about Whitney's makeshift tubie jammies.
"X" marks the spot of her button.
I simply snipped a hole, leaving a little flap.
TaDa! easy access to her feeding tube with out disturbing a sleeping baby!
My amazing husband so willing to feed Whitney every night!
Pediatric Surgeon says absolutely no GJ- tube or Fundoplication for Whitney! No GJ-tube because she has had a bad experience with it and just doesn't like them. No Fundo because she does not want to do another surgery on Whitney, especially in the same area as her CDH repair where the Gortex patch is. I also did research on these two options and they both sound terrible! Thank goodness I don't have to stress about those, anymore. The surgeon also said that we can start up the blenderized diet in 2 weeks! Yay!
They said that if the button comes out then you should immedately put it back in and check placement. Tape it to the skin so it's stable. They told/showed me how to check placment for the Mic-key button. I would simply connect the straight extension and get fluid in it by gravity or pulling it out with a syringe. If absolutely no fluid comes out at all then, it is not in place. Do not feed if the Mic-key button is not in the right place or it will cause major damage and pain. Go to the surgeon's office and they will replace it. The nurse was like, you should ALWAYS carry an extra button, BUT you don't have to! Yeah, didn't make much sense to me either!
We got Whitney weighed and she was 17 lbs. 3oz. Yay! So happy she gained weight! That was with feeding her 800-900 ml's a day! So the increase in formula helped out a lot! Whitney seems happier now that I'm feeding her more!
Remember how I said that I think Whitney will always vomit!?! Well, It started on Monday, I gave her our Goat Milk Formula all night. I decided to give it to her for the morning feed because I'm tired of her always throwing that up. And again for the next one, and for the rest of the day she got goat milk. And.....she did not throw up that entire day!! So I gave it to her all night again. In the morning I added some DuoCal to go from 23 kcals to 28 kcals an ounce. She threw that feed up! Tried it again the next time and she was fine with it. I didn't put it back in for the rest of the week...Wednesday, Thursday, Friday, and now Saturday with no vomit! Amazing! Guess we'll see the true results on Tuesday at her weight check! If the lower calories but more volume and no vomit will help or not. Plus in a couple weeks I can add natural calorie boosters to the formula!
At Whitney's feeding therapy appointment this week, she got to play in a tub of beans! At first she was nervous of it, then actually got in and had fun playing. The therapist said it was to help with Whitney's sensory issues. She also played with some baby food and rice puffs and dipped some dum-dum suckers in it. Whitney actually tasted the suckers! The rootbeer flavor three times and the bubble gum flavor once. So that day, I went and bought all of that to try it at home! Whitney loves it, but for me, it's kind of a big, expensive, mess! LOL.
Beans. (forgot the type) 20lbs for $10 from Costco. Cheaper than Pinto Beans.
Got miss whit weighed on tuesday and she gained!! In two weeks she gained 7 oz! That's huge! and very surprising! She's been 16 lbs 14 oz for a month solid! Now she weighs 17 lbs 5 oz. That's 7 oz! Pediatrician said she should gain about 2 oz a week. The wierd thing is that on our no goat's milk formula trial Whitney threw up 3-4 times a day! Way way worse than the 1-2 times a day. I'm so confused. I don't knew if I should go back to the goat milk or wait another week, getting very mixed signals.....threw up a lot yet gained a ton of weight....
Whitney is still not interested in eating by mouth. She gets very upset and frustrated. Which makes me less motivated to feed her. But I hold strong and let her play in her food 2-3 times a day. Even though I'm getting very tired of her vomitting all day and grumpiness, I know I need to do my best for Whitney, and one day she will be an eater!
But Whitney did not throw up today!! I'm almost in disbelief and I'm shocked! I don't know what we did or didn't do to accomplish this but I pray we will have these days more often! Her feeding schedule today was:
12- 6am 200ml total 33ml/hr goat milk formula with duocal
10-12pm 150 ml total 75ml/hr goat milk formula
2-4pm 150 ml total 75ml/hr Neocate Jr.
6-8pm 150 ml total 75ml/hr Neocate Jr.
10-12am 150 ml total 75ml/hr Neocate Jr.
800ml total today! with no vomit!
I was very consistant with her feeds today. Not much high chair time. She took only one and a half naps. She went shopping for a couple hours. And overall she was very happy today!
Not much new from today's speech/feeding therapy. Still working on the same things like, well, getting Whitney to eat food. She thinks she will progress better once she gets the G-tube. Whitney's weight today is 16 lbs 14 oz. Which is a one ounces gain. I'm guessing she lost a couple oz when the tube was out but atleast she didn't lose too much. This further leads me to believe that she is not ready to be weened off the tube.
Here is a video of me and my mom putting the NG tube back in. Warning this is sad she poor Whitney is screaming (obviously). So only watch if you want to know how to do it yourself.
I feel bad not feeding Whitney but now I know that it is the NG tube making her gag and throw up. This morning she ate scrambled eggs, slept for 3 hours then ate some Ramen noodle soup chicken flavor and Saltines. My mom and I put the tube in shortly after lunch and had Whitney on a slow drip so that she wouldn't throw up with a bolus feed. Maybe, if I can get enough formula in her she would tolerate a slow drip and not vomit. Of course that's super annoying for me because I have to hold the pump all day! But that's what we do for our tubies!
Also, last week, her physical therapist said that Whit is doing great and that she needs more speech/feeding therapy. So that's a really good thing that she doesn't need much more physical therapy. I'm looking forward to more feeding therapy and think it will be more useful once Whitney gets her G tube. I think Whitney will do great on a G tube and once she gains a lot of weight and is really healthy, then we can ween her off! (with out starving her!).
Also, I'm super excited because we get to go to Tucson to have Marsha Dunn-Klein from mealtimenotions evaluate Whitney! I've heard she is the best and she and her dietitian can help us with a blenderized diet! And it's covered by my insurance! Of course it's a crappy 2 and a 1/2 hour drive there but it'll be worth it!
Whitney will 13 months old in exactly one week from today...
I'm posting a couple videos of my daughter eating some Mac & Cheese. Whitney threw up and was choking on her NG tube so we pulled it out. It was last replaced about 2 weeks ago anyway. This is the first time she ate solids with out the tube. I was amazed at how well she did! Because normally she won't even try to eat it for one and if she does try, she gags on it and would throw up. Now I know it's because of the feeding tube, having something in the back of my throat would make me gag too! Whitney ended up about 10 pieces of Mac & Cheese! I was so happy! Later she actually ate about four Gerber Puffs sweet potato flavor and three graduates lil' crunchies veggie dip flavor! Also amazing! Normally she'll barely eat one and gag on those too. After she fell asleep I fed her a bottle of Goat Milk Formula, thicken with powdered rice cereal in a Dr. Brown bottle and she drank 90 mL's or 3 oz! Pretty good! Instead of giving her the Revatio, we put the oxygen on her at 1/4 Liter Flow. And are monitoring her sat's. So far so good! I will try another bottle in a few hours, around 2AM If she doesn't take that then I will put the Ng tube in a start a slow drip. Then pull it out in the morning and see how she does eating with out it! 10 days till G tube surgery...
These videos are for educational purposes.
Whitney went to her speech/feeding therapy today. The therapist K. also does Craniosacral therapy to help Whitney relax her neck and shoulders and ribs. She put Whitney in the high chair and had her dip spoons and a toothbrush in water and then in flavored water. Whitney did really well with that and actually drank it from a spoon! Then the therapist K. put some puffs on the tray and tried to get Whitney to eat them. She took a few which is better than what she does at home. I'm surprised that Whitney didn't gag on that and throw up! It was a pretty good session!
Usually Whitney loves to eat shredded cheese and some noodles or rice, but the past couple of weeks she just throws everything on the floor. K. said to teach by playing a game with her to show her put things in a bowl or cup or my hands so that she doesn't just throw her food and spoons. One time Whitney let me put little pieces of ham in her mouth and she seemed to like it and didn't even gag!
I'm wondering if that with this strict feeding schedule, that Whitney just isn't hungry at all and to try to eat more just makes her want to vomit. So my delema is do I skip a feed to try to get her to eat solids or just keep pumping formula in her so that she gains better weight? Right now she gets 800 mL's - 840 mL's a day of 30 kcal formula which is Goat Milk formula at night (200ml) and Neocate Jr. Unflavored during the day (600-640mls). She vomits one-two times a day about 4 oz. GI Dr. M (or his nurse) says that's okay as long as she's gaining weight....would she gain more weight if I fed her less and she didn't vomit so much? Or is she just vomitting because of the tube in her throat? When we first started the Neocate Jr. Whitney went a full week with out throw up! Well I have two more weeks to figure this out before she gets her G-tube. I'm thinking I just want her to gain more weight and be strong for the surgery, then try the blenderized diet and when she's healthy and strong try to ween her off the tube.
Today Whitney is 12 months and 3 weeks old and weighs 16 lbs 13 oz.
Here is a video of Whitney trying to eat a MumMum's cookie carmel flavored
