Wednesday, July 29, 2015

One month post wean

Not a ton has been going on since my last post, but there was something that I was going to write about, and now I don't remember what it was. I'll just start writing and hope that the thought comes back to me.

One really big milestone that Elsie passed this last week is her very first sleepover away from Mommy and Daddy. For a Father's Day gift for Clayton, I booked a weekend away for the two of us at the Homestead Resort in Midway. It was nice to get away for a night to ourselves, and we are so lucky to have Grandma Linda and Auntie Mona to watch our girls for us. Elsie had a bit of a hard time sleeping in the middle of the night, but Grandma handled it like a pro, probably because she is one! Thanks so much for watching our kids.

Elsie is still maintaining her weight, but possibly gaining AND losing weight, if you trust our scale, which I currently don't. It's very up and down. So who knows how much she actually weighs right now. I am trying to pay less attention to the scale and more attention to what is being swallowed, which is improving every single day. Yesterday for lunch, she ate three child-size portions of Ramen Noodles (aka Crazy Noodles) with peas, carrots, butter, and an egg cooked in for extra nutrition and calories. She also ate two portions of applesauce, a handful of animal crackers, and lots of water. I'd say that she probably swallowed about 80-90% of the food, which is really huge for her. Don't get me wrong, that's not a typical meal for her, she usually eats a lot less than that, so I was pretty surprised at this huge meal. But she's eating when she's hungry. She is two, and eats like a typical two year old. At least, a typical two year old in my family. Big sister Evje has never been a huge eater, but again, she eats when she's hungry.

One thing I was thinking of that has been affected by Elsie's tube wean is brushing her teeth. Before weaning, brushing teeth was a fight; she hated it, and we compromised with me only brushing her teeth for three seconds. I would count to three while we brushed, and she only tolerated it because she knew that when I got to three, the torture was over. Her aversion to nearly all things oral was just too strong for any serious teeth brushing. Now, things are different. She doesn't mind brushing her teeth at all. Of course, like a typical two year old, she insists on brushing her own teeth and will only grudgingly let me help her after she has brushed her own teeth. But it's no longer a fight, she'll willingly brush her teeth, and for longer than three seconds. That's pretty awesome.

Another cool thing that we've been able to do since weaning is swimming lessons. I waited until the end of the summer to schedule our Mommy and Me swim lessons, because before weaning, I was nervous how she would do if she choked on water in the pool. It has been our previous experience that Elsie choking on water in the pool quite frequently leads to Elsie vomiting in or near the pool. There is a pile of rocks at the Seven Peaks in SLC that I will never look at the same way, because that's where she puked last summer after choking on pool water. Anyway, I was a tiny bit nervous when we started lessons this week, but of course Elsie has handled everything like a champ. She hasn't vomited in such a long time (at least, a long time for Elsie!) that I'm now very confident that any choking in the pool would not result in puke.

Overall, things have been going well. We haven't used her feeding tube at all since the weekend we spent in Arizona (July 10-12) when I was slightly panicked when she was super grouchy one afternoon. Turns out it was probably just the pain of three of her canine teeth poking through that was causing the unhappiness. Before that time, we hadn't used the feeding tube since June 28. So not counting the time when I was a panicked mother, we haven't used her feeding tube in ONE WHOLE MONTH. One month. I can't even believe it. One month and ten days ago, she was 100% dependent upon her feeding tube for food and liquid and medicine. Tonight, she was a bit fevered and still having pain from her canine teeth. I filled a syringe with children's ibuprofen, gave it to her, and she calmly placed the syringe in her mouth and squeezed the medicine into her mouth and swallowed it. No problem! One day this week or next when I get time, I'm going to put away all of her feeding syringes and paraphernalia. We're not going to be using it again. There's no doubt in my mind.

Sunday, July 19, 2015

3 weeks post wean

Just a few random thoughts and tidbits about our little Elsie, 3 weeks after learning how to eat by mouth.

Elsie is maintaining her weight. That means she hasn't gained any weight these last two weeks or so, but more importantly, she hasn't LOST any weight. The weight gain will come, I'm not overly worried about that. Heidi said that most kiddos maintain their weight for a month or two or sometimes three before starting to gain. It's all part of the process of the body learning how much food they need, continuing to improve the swallowing, and branching out to more and more foods and being successful swallowing them. 

In the meantime, we are boosting calories wherever we can, adding butter and/or heavy cream to most of her foods, offering whole fat milk and yogurt, and of course she can have all the peanut butter, avocado, and Nutella that she wants.

Elsie continues to improve her eating skills bit by bit (or bite by bite, ha ha) each day. Each day she is more successful than the last. With her favorite foods, I'd say that she successfully swallows 95% of the time. She is also able to tolerate bigger quantities of food in her mouth. 

Still, I am constantly reminded that Elsie is indeed a typical, picky 2 year old. Some things that she loved to eat two weeks ago are now refused. Or she'll ask for food and then only eat two bites of it and be "done". Same exact things that Evje did back then and occasionally still does. I try to remind myself how "normal" Elsie is behaving and that she is ok, and not stress out over it.

My last thought that I wanted to share with you all is a good one .... when was the last time that Elsie threw up? I honestly don't even remember. I know that it was at least a week or two before starting her tube wean, so more than one month ago. That means that Elsie is now going on her longest ever no-vomit streak in the two years since she has had her g-tube. How cool is that?? And even better, Elsie has had a cold this week. If you have been following this blog for long, you know that for Elsie, having a cold = mucus and mucus = vomit. So even with her gross booger nose PLUS teething, Elsie hasn't puked a single time. To me, that's nothing short of miraculous!

Here's to more eating and less vomiting for the rest of the year!

Friday, July 17, 2015

Camping at the Homestead

I know I know, I'm several days overdue for an update!

We survived our 4 day long road trip/camping trip to Arizona for Clayton's extended family reunion! I was pretty panicked the night before we left, worrying that there would not be enough food that Elsie could successfully swallow while we were away, plus I didn't know if we would have access to a fridge or freezer. So I might have gone a bit overboard at Walmart, buying up several containers of baby food, fruit puree in pouches, and single portion containers of peanut butter and Nutella, to name a few.

Elsie did pretty good on the way down, as far as eating goes. She munched most of the day during our drive on baby/toddler munchables that melt in your mouth easily, like rice rusks, toddler cookies, and wagon wheels. She also swallowed a good deal of Pringles chips and a few Go-gurts, among other things.

Throughout the rest of the weekend, it was kind of up and down, good and bad, just like it is here at home. She wouldn't swallow solid foods super great during a meal or not be interested at all in the pureed food I brought with us that she can easily swallow, but then later on in the day would eat an entire half of an avocado. I realized halfway through the weekend that most of the baby food we brought with us tastes like crap. A container of baby food pureed Mac & Cheese, which I thought she'd love because she loves Mac & Cheese, tasted awful because it had sweet potatoes mixed in. Dang baby food makers trying to make our babies eat nutritious foods. And the Gerber toddler yogurt that I brought with us specifically because it doesn't need to be refrigerated, tasted like chalk. She refused to eat most of the baby food that I brought with us, and I don't blame her because it was mostly all disgusting. So we fed her a lot of peanut butter, avocado, and snacks like Teddy Grahams, chips and cookies. Great nutrition, eh?? Hey, we did the best we could in a tough situation. She still chewed and attempted swallowing several solids during meals. She ate probably half of a pancake doused in syrup and loved chewing up bacon and sausage.

She took a nap on Saturday afternoon, and then was pretty grumpy and clingy for the rest of the day. I was worried that she might be getting dehydrated or that she wasn't eating enough. Then during one of her crying spells, I got a peek in her mouth and noticed not one, but TWO of her canine teeth poking through her gums. No wonder she was feeling grumpy! That made me feel a lot better that it wasn't necessarily related to her feedings. But just to ease my worried mommy heart, I gave her a syringe of water through the tube as she went to sleep. She probably would have been just fine without it, but it made me feel better, so I did it.

On an unrelated to feeding note, we had a blast on our trip. It was our first camping trip with Elsie and my first time camping with Evje. The kids did mostly great, going to sleep easily in our tent. Elsie woke up unhappy a few times each night, but we chalked it down to her teething plus it was kinda cold at night. It rained off and on all day Friday, was hot and dry on Saturday, and then rained again on Sunday afternoon as we were leaving. Evje loved being able to play with her cousins all day long, only stopping to eat meals. We hiked up to ladybug log, Evje participated in her first race by walking and occasionally running for 2 miles, had a kids talent show, played "Mountain Cricket", and of course lots of visiting with our family. It was great to learn more about Clayton's great-grandparents, Elda and J. Albert Brown. Plus I loved finally being able to go to the Homestead for my first time, where the reunion was held, which I have heard about since we got married.

Sunday afternoon after the reunion was over, we drove with Cameron and Sarah to Moab, where we planned to camp for the night and then spend the next morning exploring nearby Canyonlands National Park. We got to our campground, got our tents set up, and then let the kids chase each other around with glow sticks in the dark. We had just gotten the kids settled in the tents to sleep, and I was just about to take a shower when the wind started to blow ... and blow and blow and blow. A huge windstorm had come upon us and our tents were being blown about like crazy. We tried to stick it out for a while, because for some reason our children were dead asleep despite the deafening flapping of the tent and howling of the wind. But we knew that it was only a matter of time before our brand new tent was torn to shreds by the wind. Cameron and Sarah's tent actually broke; one of their tent poles snapped, and I'm sure ours would have followed the same fate eventually. So around midnight, we loaded our sleeping children into the car, managed to pack up the tents without being blown away, and headed out of town. Our original thought was to go to the nearest town and get a hotel room, but being only four hours away from home and with our children sleeping peacefully in their car seats, we decided to just drive home. Looking back, it was probably a dumb idea, considering the dangers of falling asleep at the wheel or hitting a deer in the dark, but we rolled safely into town just after 4am. Clayton and I put our still sleeping children in their beds and then fell into bed ourselves and passed out.

Monday, July 6, 2015

One day at a time

This weekend we had our first big challenge: traveling away from home and eating in unfamiliar places. I'll be honest, it was kinda hard. But it was good practice for this upcoming weekend, when we will be away from home again. 

We brought a few basic "safe" foods with us that we knew she would eat, like peanut butter and Veggie Straws, but we had to get creative a few times with what we could find around my brother-in-law's house. She drank a lot, which is great, especially because the temperature has been about nine hundred million degrees around here lately.

I try my hardest, but sometimes I get frustrated when Elsie spits out her food or when she refuses to even try something. Occasionally I have to hand her over to Clayton and ask him to feed her while I go in the other room and try to relax. And you know, she almost always seems to eat better for him. 

Anyway, by Saturday evening I was feeling all worried and hovering and Mother Hen-like because she hadn't eaten a lot all day. Elsie was tired and grumpy from being in the car and not getting enough sleep the night before, and I knew she had to be starving, too. Imagine my surprise when she ate almost an entire hard boiled egg with mayo (egg salad) and 3/4 of a container of yogurt. That's the most volume she has ever eaten in one sitting! 

The following day at church, she only had one tiny episode of spitting food out and ate a handful of baby cookies and Cheerios. Plus, for the first time ever, we let her take the sacrament (small morsel of bread and tiny cup of water) and she did fantastic. No choking or spitting. I was pretty dang happy! She later ate half of a piece of birthday cake and a few tablespoons of Ricotta cheese, plus a popsicle.

Today has been ... Monday, I guess. It was kind of a busy morning and I had a lot of things going on, and my frustrations with everything were through the roof. I don't ever want to complain about my kids, especially Elsie, but sometimes it is so hard, so please understand me venting my frustrations on this blog. Elsie is most successful when she takes small bites and swallows what is in her mouth before she gets another bite. In order to do this, it's almost like I'm spoon-feeding a 6 month old baby. I can't just hand her a bowl of diced avocadoes, because she'll shove a whole handful in her mouth and then not be able to handle it all and spit it out. I either have to hand her one piece at a time or spoon feed her one piece at a time. It's very time consuming. I also get frustrated and can't handle the spitting when it is something that I know she can swallow easily and has swallowed before. Often she will spit something that is in her mouth simply so that she can take another bite of food, or if she wants to take a drink but isn't done chewing yet. With Elsie's tiny little body, every single bite counts, and it's so hard for me to watch when she spits instead of swallows. We are watching her weight closely, and if it drops down below 10% of her pre-wean weight, then we would need to supplement with a tube feeding. So far she is doing ok and hasn't needed that yet, knock on wood.

Anyway, this really is a roller coaster ride, and every day is up and down. Some days are better than others. Some meals are better than others. I have to remind myself that this is how a typical child is. Heaven knows that's how Evje is! She certainly has her good meals and bad meals too, so I need to allow that for Elsie as well. I also need to remind myself that it is normal for toddlers to only eat certain things for periods of time. If all that Elsie swallows today is yogurt, cheese, and Veggie Straws, then I'm sure that there is another 2 year old out there somewhere who will only eat hot dogs and goldfish crackers today. It all balances out in the end. And now that Elsie recognizes what hunger is and how to fix it, she's not going to let herself starve. She will eat. Her body now knows what to do. For now, we are all still alive and are taking things day by day, meal by meal, Veggie Straw by Veggie Straw, one day at a time.

Thursday, July 2, 2015

Tube Wean, all alone, Day 1

Ha ha how's that for a depressing title? It actually hasn't been too hard since Heidi left yesterday morning. It was just super nice when she was here, because she was basically Elsie's personal assistant and slave, and now I am, haha! It's a lot of work. I can't complain though, because she is eating. This is just the "intensive phase" of the wean, which means that it's intense. It's a lot of work for her and for me. Elsie hasn't miraculously stopped spitting out all of her food. She stopped spitting out some of her food! She is still learning to chew and swallow properly, which takes most young children around 6 months to get the hang of. She not only has to do this, but also overcome the habits and fears that she has developed over the last two and a half years of her life.

Heidi counseled me that Elsie's skills will continue to improve as times goes on. Right now she has maybe a dozen foods that she successfully swallows, and that list will grow, and it will start snowballing quickly. And as long as she maintains her weight orally, then there is no need for tube feeding. I can't even believe that I haven't picked up a syringe or extension set since Sunday! Life without tube feedings definitely isn't easy yet, but it will be soon, and it is better. Elsie loves to eat. She gets so excited to see her favorite foods.

It really has been a dream come true to have Heidi come to our home and help wean Elsie from her tube. I lost track of the times that I told her "I can't believe this is really happening!" It has been amazing, and still is amazing, every time I see her willingly swallow a bite of food, or drink an entire cup of milk. It's a daily miracle unfolding that I get to watch every day.

 Does anybody have any questions for me about the wean?