Friday, February 20, 2009

Less Than 2 Weeks To Go...

Pictures 1, 2, 3: My little drama queen! (Such a great present Car) on her second favorite ride, the wagon.
Picture 4: the Buggy of course!
Picture 5: Kenzie and the man in her life

So our countdown has begun! We are now in feeding bootcamp. A lot has happened over the last 2 days. Yesterday, the feeders left the room and started watching from observation. Kenzie had my number! She decided to test me in every way she knew how and pulled out all the stops. She started with a lunch meal where her negative vocalizations (aka crying) were at an all time high. She refused a few bites, gagged, vomited, and didn't swallow all the way. BUT... I didn't miss a beat! I had no idea Kenzie's Behavioral Psychologist was watching but when I came out she was telling me what a great job I did. I think she underestimated just how much of an anal person I am. That or she just doesn't know me at all so she has no idea. I've been taking my notes over the last 6 weeks and I am not about to throw all this hard work away by giving into Kenzie or by messing up. Also, I think I'm harder on myself and Kenzie than the staff here is. When they would probably accept her opening her mouth as a swallow... I have her make more of the food all gone. The main point is that they loved seeing me in a "horrible" meal with Kenzie because they knew that they could now trust me to feed Kenzie on my own without screwing up.
So... last night I started feeding Kenzie a "snack" meal. A snack meal is the same as all of her other meals except that it happens at night and there is no staff present to take data. They also had me try to feed it in my room to see how Kenzie would do in a different setting. For 2 nights now we have done this and it's going really well. Last night Kenzie had some issues with her peas. I think maybe they were extra grainy or something because on every pea bite she gagged or vomited. I told the staff that this morning. Other than the vomiting we did great. Tonight, the meal was what I would consider PERFECT! Kenzie took all of her bites, never needed the nuk, did not refuse any bites, and did NOT vomit! Both nights staff and people came in and out of the room and even though she had some distractions for the first time she loved it even more. The other fun part of feeding her in the room was that I was able to skype jordan in so he could watch. What we did was turn the webcam towards kenzie and jordan would press mute at home. Jordan could hear and see us but Kenzie had no idea Jordan was watching. It was like he was here and in the observation room. It made him so happy to get to see.

The other new thing was that today they started adding drinks to Kenzies meals. After I finish feeding her, the feeder comes in and starts a drink session. Kenzie has to take 8, 1/8th drinks adding up to a total of 1oz of water. They have her drink it from little tiny medicine cups. If all goes well which I think it has today, Sunday we will switch from water to her formula. Every ounce of formula Kenzie drinks by mouth is a half hour less of tube feedings! Right now, Kenzie is getting about 195 calories a day by mouth from food and still 600 calories in her tube. Her food is still stage 1 puree and will remain that way for sometime as she's really not doing well with any texture. All in all Kenzie's progress has been really great and we are totally happy. Hopefully next week I'll be able to add drinks to my snack meal too.

Last but so far from the least are our many thanks. I can't believe how generous everyone is! Seriously... you really don't have to. Maureen, thank you so so much for the chocolate and bowling set. Aunt Betty and Uncle Richie we are introducing everyone to "jewish" baking because of you! To my mom's mahjong (ill never spell it correctly) friends - Toby, Cathy, Linda, Paula, and Lois, we have used the books in Kenzie's feedings and they are all so fun. Kenzie's roommate Chance even took one of them into the bathroom to sit on the potty (such a boy!) I can't remember if we thanked cousin Zachary for the bowholders so I'll do it again now. We can never obviously have enough room for bows. Weller Family, that chocolate went so fast you wouldn't believe it. The nurses were in and out of our room sneaking into the stash! Even though it was awhile ago, the entire Angel family... I really can't remember if I gave the shout out you deserve but thank you guys! I promise one of these days I will send proper thank yous to everyone, just I have not really had any freetime to do it. It's hard to believe but we really are so busy here all the time. Ok there... I think I got everyone and if I've forgotten I promise we are so happy every time something shows up here. It's really unnecessary! We are so lucky to have family and friends like all of you!

Grandma Eiee and Grandpa Billy came and love watching Kenzie eat and play. They'll stay here through the weekend and love her up because Jordan is on call. Jordan will come back Thursday morning and will start his training. We are joking about who will be the better feeder. Have a great weekend!!

Wednesday, February 18, 2009

Feeding Your Child

Pictures 1 & 2: Lilli and Kenzie doing our laundry
Pictures 3 & 4: Kenzie trying hot fudge for the first time.
Picture 5: Kenzie doing her sign for "More" at dinner the other night

I don't think anyone can truly understand what it's like to feed a child that doesn't eat except for other mothers going through this. Until I sat down here to type this, I don't even know if I got the enormity of how great it felt. When I was pregnant all I wanted to do was breastfeed. I don't look down upon people who don't but for some reason it was just something I always wanted to do. I loved the idea of getting to give my child that time with me. So at 2 weeks old when I was stripped of that ability, it was truly heartbreaking. Few people know how hard it was for me to wean myself and watch as I would have to pour my milk down the drain, especially since some people try so hard and just can't produce. I was producing more than enough and yet my daughter was completely allergic to my milk. First, I was told my anatomy was too small to fit a baby and I needed an emergency C-section and then this. As a new mom I don't think you can feel more inadequate than that. I was lucky to overcome the horrible feelings I had about myself as a mother in order to take the best possible care of Kenzie but it is a constant struggle when I think of that time. To make things worse, because of all of Kenzie's issues, very soon after, she started refusing a bottle. Again, the normal everyday things mothers get to do with their children was something I'd have to do without. Some people find it annoying to have to stop everything to feed their babies or give bottles... but I assure you that if for some reason you couldn't, it would be missed. Jordan and I had to give up a lot in the last 15 months with Kenzie and the older she got, the more we saw the big differences between her and normally developing children. Sometimes we would try and make jokes about the fact that Kenzie refused to put anything in her mouth and sometimes we would remain silent while thinking how sad it was in our heads. But, for the most part we were able to be thankful that cognitively she was and is perfect.

To make things worse there have been other people who have said flat out to us "you know how it is" or "I totally understand you" when their babies aren't transitioning well from formula to solids... or when their children are a bit picky with textures. All this while their child is sitting in front of us holding their bottle. When we hear things like this inside we want to either cry or scream at them but we try and remain as polite as possible. But I guess I am finally venting... NO! We don't know how it is and NO! You don't understand. You can't possibly. We came here because our child was 100% tube dependant. She was also for a long time 100% TPN dependant because she couldn't even digest any formula we tried giving to her stomach. We so badly WANT to know what it's like but we have not been that lucky.

For the most part both Jordan and myself love talking to other parents about the normal everyday ailments that babies have. Ear Infections, Shots, Colds... bring it on. But feeding has always been a sore point because Kenzie's oral aversions are so abnormal and we both have always felt like maybe if we had done something different we could have prevented this (as much as every professional tells us we are crazy). As I sit and write this now, I've noticed its rare I let myself be so free with my thoughts to anyone other than Jordan but I think it's important for moms like me to get this out. I can say it aloud right now that for the last day I have fed my child! I would hardly say that the way she is eating is normal by any stretch of the imagination but she is taking food by mouth, and I am the one giving it to her. Also, for the most part, even though she is far from happy, she is not fighting it!

I caught myself during my lunch with Kenzie and really just couldn't believe it. I have fed now 4 meals of 3oz each of totally pureed foods to her. She has tested me already but I didn't miss a beat. Saying things like "Kenzie, open big" and "Great job swallowing" are becoming second nature to me. Ignoring her bad behaviors and resisting the urge to coddle her when she vomits are becoming easier and easier as I can see what a difference it makes. I guess I don't need to give many details on how my feeding Kenzie is going as my post probably says it all, but in short, after all of the worry a few weeks ago whether KKI was the right decision for us at Kenzie's young age; Jordan and I now know we have done the right thing. Kenzie will one day get off of her GTube and we will work hard everyday to make that happen as soon as she will let us.

Monday, February 16, 2009

We love visitors!

Picture 1: kenzie and aunt fay
Picture 2: kenzie and uncle scott
Picture 3: kenzie's funny face
Picture 4: Kenzie trying to smash daddys crabs
Picture 5: Jordan's aftermath

Yesterday Kenzie's Great Aunt Fay and Great Uncle Scott came to visit. They got here bright and early so they could see all 3 of Kenzie's meals. All 3 went amazing!!! Kenzie's primary feeders really can't believe her transformation. Also, the therapists that feed her sometimes or have taken data all have looks of shock on their faces when they look on. We really don't know what clicked in Kenzie's head but something is working. She is eating so fast now we don't even have time to click a timer. She probably takes 2 bites in her allotted 30 seconds for 1. Kenzie is now getting 9oz a food a day and probably has only vomited about 1 - 2 maybe total. We can't wait to see the nutritionist tomorrow because we know for sure there will be more tube cuts in store.

The new development with her feeding is that I am now in the room with her. I have gone back to my high school ranks and have joined her team as captain of the cheerleading squad. Yesterday at lunch when Kenzie looked up and saw me in there she started to giggle. Then she looked again and started giggling some more. She really loved having me watch her. Today, they promoted me and had me give Kenzie her 15 seconds of incentive every other bite. Kenzie was tired though for lunch today and although she ate all her food and did it quickly... she was very cranky and cried a lot. Hopefully dinner will go a bit better. I think tomorrow at either lunch or dinner I may start feeding her! I am very interested to see how she does with me since most of the practice I ever got before KKI was nightmareish.

This weekend when we introduced yet another food (corn) into her puree list, I realized I haven't blogged about one of the most important things I think about everyday here. Kenzie ate corn Saturday for dinner and had a bunch of diarrhea Sunday morning. Although shes been doing great digesting everything we have given her so far... her diet has been VERY limited. Besides fruits and vegetables all we have tried is rice cereal and oatmeal. We have not even given her anything we think she would react to until the corn. We are so happy on a daily basis about the improvement with Kenzie's eating we sometimes forget or try not to think about if the shoe will drop. For those who have just started following, Kenzie's oral aversion is due in major part to her lack of ability to digest anything for the first 8 months of her life. Kenzie could not tolerate breast milk. She also lost weight on Pregestimil (which is a few steps more broken down than regular formula). For 7 months Kenzie was on Elecare which I think something like 99% of the population can digest. If she ever had more than a total of 7oz a day, she completely stooled out and always had diarrhea. Kenzie was TPN dependant until July because of this. She used to sometimes have upwards of 17 stools a day. Until we found Vivonex Pediatric which is the formula she is currently on she never took a full daily dose of anything into her stomach. Vivonex is basically another step below Elecare. It has less fat than Elecare. Every time we go to a new GI dr, their first question has always been to us, "well what can she digest by mouth?" and we have obviously never had an answer for them because she wouldn't take anything by mouth. The more foods we introduce, the more we get nervous and less nervous (if that makes any sense). We get more nervous because we take one step closer to finding her breaking point, and less nervous because she is digesting everything so far. We gave Kenzie corn again last night at dinner to see how she'd do again and all seems to be well, so hopefully it was a one off thing. In about 2 weeks time we should finally get the results from the Dr in San Diego who is testing all 3 of us for a rare genetic condition but we really believe the results should be negative based on how well shes doing now. We might never know what is or was wrong with Kenzie from birth but as long as we can have her on a good solid diet, it'll be ok.

Now back to the fun stuff... We went for our regular Sunday breakfast at Jimmy's with Aunt Fay and Uncle Scott and then to dinner at Moe's Crab Shack. I was expecting a dive given the name but there were tablecloths on the table and it was much nicer than we expected. The food was super good and Jordans meal was worthy of the pictures above. Kenzie had a great time coloring with Aunt Fay and playing in the playroom with Uncle Scott and we were really sad to see them leave.

Tonight Jordan will go home and not be back until after his Vegas trip. It'll be about a week and a half. I was supposed to go with him originally but as usual... things in our life don't seem to work out as planned. When he comes back, I will be Kenzie's primary feeder and Jordan will get trained himself. I would assume also by then that we will have added a 4th meal in the evenings.

I don't think I ever got to thank Auntie's friend Lois for the great gifts and all of her students and coworkers for theirs as well but I really wanted to! One of these days you all will get thank you cards but my time has really been limited down here. kenzie's taking her usual nap now and hopefully dinner will go better than lunch... fingers crossed!