Montana Trip, Day 3

Today is actually the beginning of day 4 in Montana but its only 6:30 in the morning so there is little to report about today. This kids did amazing flying out here. McKenna slept in mommy's lap the flight to Denver, or at least most of it. My arms and legs kept falling asleep so there was a lot of wiggling and moving. Apparently it is hard to hold a 26 lb 3 year old for over an hour. Keaton slept Denver to Helena. Hoping they will both sleep at least one of the legs home too, although when they werent sleeping they were content with the iPad so it all worked out. We have been able to hook Mickey up to her machine every night without problems so far but she is eating awful orally so that adds a ton of stress. I would actually say she is doing just okay, but daddy is very upset with how much she isn't eating as opposed to concentrating on quantity that she is, which than makes me feel like she is doing worse than she actually is. There is no doubt this is the biggest stress of the entire trip, McKenna not eating quantities daddy wants, and he is sure to bring it up every couple of hours, if not more. The other tricky part of the travel is schedules. Normally I am verrrry scheduled, but I am in montana for less than a week and havent been here for 4 years. My priority is family and spending time together and everyone being happy. Unfortunately, daddy is very upset if we are 20 minutes off which makes it difficult to do anything. The twins have basically an hour or two during the day tht they aren't eating or sleeping, so it makes if frustrating to not be able to be with family other times too. We stayed in a hotel, per daddy's request and it has been nice to have a clean place to sleep. He down side is my kids go to bed 7:30, which means I have to be back at hotel by 7 to get feeding tubes ready, pjs on, evening snacks, meds, etc. I am very disappointed in the way this trip has turned out, though I am not in the least bit surprised. Next time we come to Montana it will be much easier if it is just me and the kids! It's 7 am now. Debating waking kids so we can go eat breakfast before daddy gets back from his run and yells at us for not eating enough. Grumpy kids or grumpy dddy. Which is worse?

Day four, and he is dry

Woo hoo. This is day four of potty training Keaton and he is doing awesome. Daddy decided we should offer Keaton iPad time if he uses potty. Keaton gets three minutes for peeing, ten for pooping. He has had a dry diaper all day long, up until five minutes ago when he pooped in his diaper, by hey, still no diaper peeing. mommy is hoping this is it and we won't have to go months of training. We have stayed around the house for four days so we are very anxious for him to catch on. He has even told mommy a couple times he needed to pee. We are not potty training McKenna right now. Tried first few days but she wasn't going in potty and was getting backed up so we have stopped, per the advice of her feeding clinic.

Still going

Feeling emotionally drained. We are over two years on the feeding tube. I looked at pictures today of McKenna in the nicu and thought, wow we have come so far. We are off the heart monitors, she has energy, we aren't cleaning up puke or watching McKenna retch throughout the day, it in the pics mck is eating. She was excited for her bottles. They would have to pull the bottles out of McKenna's mouth so she wouldn't choke she drank so fast. It's frustrating now I can't get her to eat, and I'd I do it is such small portions. It is frustrating I have to hook her up every night and that we have to plan life around a feeding schedule. It's frustrating I can't potty train because it messes up her bowel movements and at messes with her eating. Is frustrating she won't drink and in order for us to play outside I have to plan it around when we can give her syringes of water without it effecting meal times. I am exhausted and want to stop thinking about it all! Any time now, God! We are still waiting for yet anotherrrr healing.

Third Birthday

We spent a weekend filled with fun and entertainment for the twins' birthday. Thursday we visited grandpa Bernie at work and ate at a cute pizza place with grandma Susie. We had our last First Steps feeding therapy session ever with Ms Robyn since McKenna graduated their program due to age. Friday was Good Friday so we went to the zoo with daddy and grandparents. Kids fed the giraffes and goats and we road the zoo train. Saturday was the church Easter egg hunt and the petting zoo where the twins fed ducks and pet the bunnies and then daddy took us to pizza hut for the buffet since kids are free before age three. Sunday was Easter and we woke up and opened presents early since daddy was out of town on their actual birthday, Tuesday. Keaton got a race car stunt track and a turtle that shows the stars which arrived broken. Keaton broke the race track so mommy had to go exchange it during kids nap time. McKenna got two babies, one looks real but doesn't do anything. The other is a baby alive that eats and drinks. She loved them both.

Tuesday was their birthday. The twins woke up and got to choose what they wanted to eat. They had fruit snacks and split can of Pepsi with mommy. Liz brought the kids over to join us for lunch. they brought presents for the twins -- bubbles, framed pictures, water squirt sticks that Keaton plays with when he goes to play with Luke. The kids loved their presents. They went down for nap an hour late and after attempting to nap on mommy's bed and talking too much McKenna ended up in her crib and Keaton slept in mommys bed alone.

Ms Courtney joined us for the afternoon at Jump Mania where the kids played for an hour climbing and going down slides. They chose what and where they wanted to eat. Both said burgers and Big Whiskeys. I was glad they didn't want fast food. They drank a ton of Dr Pepper and Coke. Keaton drenched his burger by dipping it in ranch every bite. Mck ate the brown part of the burger bun and nobody ate their fries. We went and got frozen custard per Keaton's request and came home to eat it but Courtney gave the kids presents so they were to distracted to eat. McKenna got paper dolls. Keaton got a car shooter and gator golf game. Courtney read them a book and helped mommy put me in bed. We were sad daddy wasn't with us on their big day of turning into toddlers, no more babies. But we had a great day celebrating!

No increase

So this weekend was much better than the previous week. Kyle talked to the feeding clinic and agreed to attempt to get on board with their rules. We decided not to increase McKennas tube feeds so I am veryyyy nervous about the weigh in tomorrow. She looks very thin, so I expect a loss. Hoping it's not too big so the tube increase,if needed, will be minimal. She hasn't had a bowel movement in four days either which impacts her eating and then impacts her weight. Guess its really just a waiting game until tomorrow.

Waterworks

Is there ever a time when defeat is welcomed? Once again I lose. Mckenna's tube feeds will be increased again tonight. I am broken, defeated, hurt, upset, angry, frustrated...the list goes on. Why does God think our family is strong enough for this!? Grrr

Tonight increasing from 340 ml to 400 ml. Will see if that's enough of an increase to help McKenna gain. The feeding clinic said they are here to support us but until Kyle gets on board they are not comfortable moving forward. Meaning once again a clinic is done with us and we are left to figure this out on our own. I am so angry at him I don't know what to say or how to be a team with this situation.

McKenna is doing better each month. She still needs tube feeds obviously it is off the tube some and that's an improvement still from September when she was full tube. As we increase the tube she will most likely decrease the oral intake which than eventually means full tube, and then comes the gagging and puking and dry heaving. I am so angry I just want to scream and yell and cry. I haven't given up on her and I feel like increasing the tube feeds is a sign of giving up. I never want my children to think that!

My prayer, since praying is all I can do at this point, is that McKennas body will tolerate the increase and it will not impact her oral intake but will increase her weight enough to get her to a point we can try the wean again, the megace again, and eventually get her off the tube. I'm completely drained and now have to go get the twins up from their nap and act happy and like life is easy.

Feeling Down

You know those days when you wake up and you feel off? It's the weather, the atmosphere, the thought of the tasks ahead of you...it all compiles and you feel drained and exhausted? It's one of those days. I'm pretty sure if I were to go back through this blog I would find myself writing about these type of days at least once a month and that alone frustrates me. I hate the thought of not being the happy positive woman that I want to be, or I expect myself to be.

So McKenna lost more weight. Not a huge amount, but enough to effect Kyle. She actually is back down to 25 lbs which is 1 1/2 lbs lighter than when we started the wean in September. In six months McKenna has not gained weight. While she is bigger than she was at the lowest point of the wean she is still smaller than the start of it all. It is not healthy for a baby to not gain weight in a years time span, and that's whee we are at. She was this weight when she was two years old.

I have full faith and confidence McKenna can and will get off the feelings tube. I understand and accept it is going to continue to be a long process. But what I don't accept is the road of struggles to walk that long path. I hate that it causes tension in the home, fights between Kyle and me and the on gong stress of wondering if she will eat next meal.

Kyle wants to increase McKenna's night tube feeds. I do not. It isn't because the mentality that she went from seventy percent off tube to now seventy on tube. I worry more about the side effects that come with it...retching, puking, dry heaving, exhaustion, etc. Kyle emailed the clinic for direction and that he is concerned about her weight so Weill hear back hopefully Monday. I know hey will say don't increase her tube feed, but my fear is Kylie's yelling and anger about their response. So today I am down, frustrated, feeling helpless and exhausted. I feel defeated, as usual, and hopeless. I want god to come down and fix this situation. I wrote a year ago about gods power and how He only has to speak it and McKenna will be healed and how frustrating it is that He won't do tha. I have to say that after a year I am still in that same place mentally...speak Lord and let the healing begin.