Tuesday, November 24, 2015

Neonatal Follow-up Clinic appointment

Today was one of my most-looked-forward-to appointments: Neonatal Follow-Up Clinic day!

The reason I love these appointments that come once a year is that Elsie is looked at and evaluated by several specialists in different areas. I really like knowing how she is doing compared to her same-age peers, and what things we need to work on. This place has such great resources for parents and families in need, and they truly want the best for each child.

Today's appointment went very well. Elsie was seen by a speech & language specialist, got her vital signs taken, did cognitive testing, and was seen by a developmental pediatrician. All of the people we encountered were thoroughly impressed with Elsie. She is at her age-level or above for both speech & language and cognition. The lady who did the cognitive testing was stunned when I told her that Elsie had had Grade 2 and Grade 4 brain hemorrhages.

I talked to a few people there about when we could remove Elsie's gtube and who had the final say in authorizing its removal. We haven't used her feeding tube since July. I can't even imagine using it ever again! Elsie is doing so well eating orally. She eats like a typical 2 year old in every way. I know there are some doctors who recommend leaving the tube in until after cold/flu season is over, just as a precaution in case extra fluids or medicines are needed if the child gets sick, and that is reasonable. It won't be the end of the world if we keep it in until spring. I don't think it's necessary, but it won't be the end of the world. We all decided that I would call the GI clinic at Primary's, where Elsie's gtube was placed, and ask what their recommendations were.

I called the GI clinic this afternoon, and the nurse I spoke with didn't see any reason why we should keep it in, but she sent a message to the GI doctor to get his approval. Since it is almost Thanksgiving, she said they might not get back to us until Monday, but that they would call us back when the doctor responded. This possibility of being done with the feeding tube very soon is very exciting to me. Again, if the doctor says that we should keep it in until spring, I'll be a bit disappointed but it's not the end of the world. After all, spring will be here before we know it!

I'm so proud of my sweet little girl today. Elsie is incredibly smart and has overcome so many obstacles. I love her so much!

Tuesday, November 10, 2015

World Prematurity Day

November 17 is officially "World Prematurity Awareness Day", so I've been seeing a bunch of articles in my news feed on social media lately about preemies. One thing in these articles that always strikes me is when they discuss "viability", or in other words, the cut-off date between being too little to save vs. working to save the child's life after he or she is born. Being "viable" has typically been set at 24 weeks. When a child is born at 24 weeks or later, the doctors will do everything they can to help the tiny baby survive. Before 24 weeks, it is generally a decision between the parents and doctors if they want to try to save the baby, with the knowledge that if the baby lives, she will almost surely suffer from physical and mental disabilities throughout her life.

While I was reading an article on prematurity this last week, a thought came to me that I hadn't thought of before. Did any of our doctors ask us, before Elsie was born, if we wanted to try and save her? Or did they just do it? I could not remember. So I asked my live-in memory bank, aka Clayton who remembers everything, and without hesitating he responded "Yes." The doctor at our local hospital, before she summoned the helicopter to come save us, asked if we wanted to save our child. It jogged my memory a bit, and I remembered.

She asked us if we wanted the doctors at the U to try and save our baby's life. At this point in my pregnancy, I was 23 weeks and 1 day pregnant (Every single day that they remain safely inside their mother's womb is hugely important for a micro-preemie, so that's why I differentiated that I was 23 weeks and 1 day. Elsie's development would have been drastically different had I been 23 weeks and 6 days pregnant, even with just 5 days more inside of me.). Elsie was not yet in the "viable" category, and the doctor told us that she only had a 25% chance of survival. And if she were to survive, she would almost definitely have a range of physical and mental disabilities. Did we want the doctors to try and save our daughter?

Without hesitating, even though our hearts were breaking, both Clayton and I firmly answered yes. We wanted them to save our daughter's life.

I know now that Elsie is kinda special, in the fact that she doesn't have any lasting effects of her prematurity. She has truly defied the odds, especially considering the bleeding that happened in her brain in those early days. But even if she had disabilities, would we love her any less? Of course not.

Every day, we are thankful for the medical miracles, modern medicine, and skilled nurses and doctors that kept our dear child alive, despite the odds that were stacked up against her. Elsie was not considered "viable", according to the technical terms. She should not have survived, but she did. May she always be an example to keep trying, keep persevering, and overcome the obstacles in your life. Miracles happen.






Tuesday, September 15, 2015

2 months post wean

It appears that Elsie eating is so normal to me that I have stopped taking pictures of it, ha ha! I was looking through my camera for a cute picture to put up with this post, but didn't find a single new one. I'll get right on it, don't you worry!

Let's see, what has been going on? Looking back at my last post about chicken pot pie and implementing a more structured snacking schedule, it's easy for me to see the improvements that Elsie has made since then. Mealtimes are definitely more productive for her now, as she's not snacking all day. I've seen some big improvements in the amount of food she is eating at each meal. Elsie's not a big breakfast person, but neither is Clayton, and sometimes Evje too, so I'm not too worried about Elsie not always eating much at breakfast.

*Side note: personally, I don't get not being a big breakfast eater AT ALL. I mean, come on, it's been like over 12 HOURS since you last ate! How can you NOT be hungry?? Eating breakfast is one of the first things that I have always done almost immediately after waking up. Anyway, whatever.*

Elsie still has an occasional spit-out, but it is so much fewer and far between. I no longer have to micro-manage her bites to make sure that she doesn't stuff everything into her mouth all at once. She has learned what size of portions she can manage in her mouth, and usually doesn't over fill her mouth. Occasionally she does overfill her mouth, and gags a bit, but guess what --- that's a TYPICAL response to a full mouth! Every kid will gag when their mouth is stuffed full! So again, not worried about that. She usually only spits out her food now if it is something that she tried and doesn't like, or when she has overfilled her mouth. Again, typical! Even then, she only spits out her food maybe once a day, if that.

Elsie's eating skills are getting better and better each day. She used to have a hard time swallowing meats, even though she loves meat, but her ability to swallow it has greatly improved. If she doesn't over fill her mouth, then she is usually successful with meats now. It has also been fun to watch Elsie's food preferences develop, as she eats more and more foods. Some of Elsie's favorite foods are cheese, chicken nuggets, pizza, mac & cheese, and avocado, just to name a few. Typical kid foods, huh? How cool is that? And on the opposite side, we've found out foods that Elsie doesn't like. She doesn't love most vegetables, but will eat some of them. She's usually enjoys savory foods more than sweet. Most surprising, at least to me, is that Elsie usually does not like chocolate. Whaaa??? How someone can not like chocolate is just as confusing to me as not liking breakfast, but oh well. Gotta love her individuality!

One of the parts that I love the most is going on family outings or to someone else's house to eat. Most of the people we are around are aware of Elsie's situation, but they don't usually comment on her eating skills. I, however, am hyper-aware of her eating skills. I revel in watching her eat around other people, because it's so normal. There is absolutely nothing that she does while eating now that sets her apart from other two year olds. Our diaper bag before the wean would always have a few syringes and an extension set, plus either a pouch of Real Food Blends, or a jar of frozen homemade blended food. Now our diaper bag contains fruit snacks, or crackers, or cereal, and cups of milk.  She is a normal, typical child, and it makes my mommy heart so proud. Elsie has overcome so much in her short life so far. It never stops to amaze me.

Wednesday, August 5, 2015

Chicken Pot Pie, round 2

We've having a bit of trouble the last few days; Elsie has gotten into the habit of snacking throughout the day and consequently, not eating much at meals. I knew exactly how to stop this behavior: cut off the snacks. But I didn't want to be telling her not to eat food; that just goes against everything I've been doing for the last two years. I had a nice chat with Heidi, our feeding specialist, and she helped me through the situation. We set up guidelines on when to offer food and when to tell Elsie to wait. It's not going to hurt her to wait for a snack and to learn to eat more at meals. It will hurt her in the long run if we let her develop poor eating habits and not help her to continue developing her eating skills.

Anyway, we've been implementing our new eating/snacking schedule over the last day or two, and while sometimes it's hard to deter Elsie from snacking all the time, we have seen an improvement in how much she's eating at mealtimes.

The other night, Elsie was particularly hungry by the time dinner came around, since she had been denied her usual snacks. So when it was time to eat, she really ate. She really enjoyed the meal, and there were very few spit outs, if any. And then it hit me, what we were eating. It was chicken pot pie! Remember this post from a year or two ago, when I wrote about  making chicken pot pie on the night Elsie was born, and then my return to loving chicken pot pie after a long separation? And now, here we are, two and a half years later, and Elsie is eating and loving chicken pot pie. We have come full circle, ladies and gentlemen. We have come full circle. Or, in other words, we have come full pie.

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?

Tuesday, June 30, 2015

Tube Wean, Day 8

Today was our last full day with Heidi; she leaves tomorrow morning after breakfast. I'm sad to have her leave, but I know we'll be ok without her. I've put together a big list of puree-type foods that we can try, so that she doesn't get bored with the same old things until she gets better at chewing and swallowing solids.

For example, I found this recipe for "French-style soft scrambled eggs", which is eggs with milk and butter made in a sauce pan, stirred constantly so that there are very few chunks. I tried it this morning and it was a success! for once in my Pinterest life, ha ha! It was like I had blended up some scrambled eggs. They were very smooth and creamy. And Elsie ate some! She wasn't too sure about it at first, but willingly tried some, and then when we added some ketchup, she ate even more.

Then at lunch, we mashed up 1/4 of an avocado with some hummus, and we spread it on crackers with cheese. She ate several tablespoons of the spread, and then ate another tablespoon or so of just avocado. And I have discovered that blending up a cup of applesauce with a few peaches made the ordinary applesauce much more interesting to taste. So we are branching out from our original "safe" foods of peanut butter, cream cheese, and ice cream.

Speaking of peanut butter and cream cheese, we weighed Elsie again today. When we weighed her on Sunday, she was down about 5-6% of her weight, which is understandable. But we didn't want her to drop below 10% of her pre-wean weight. When we weighed her today, she was only down 6 ounces from her pre-wean weight. 6 ounces! Do you understand what this means? It means that while she did lose weight initially, she is gaining it back. Elsie is GAINING weight, strictly by what she is swallowing! As Elsie has increased her calories and volume orally, we cut back on the amount she gets via tube. The last time we gave her anything by tube was Sunday night. So since Sunday, she has gained weight by eating with her own mouth. Honestly, both Heidi and I were so surprised. We weighed her 4 or 5 times to make sure we measured her correctly, but it was the same each time. Elsie has GAINED weight. By eating. No tube. It's unbelievable.

Of course, her weight will fluctuate, as everyone's does, but as her eating skills continue to improve, as they already have in such a short time, she will be able to eat more and more, and will gain more and more weight. And soon, we'll be able to consider permanently removing the gtube from her stomach. This is not a decision that we would make lightly. Our feeding team plus pediatrician plus myself and Clayton would have to all agree together that she was ready to have it taken out. Once it's out, there's no going back, so we'd have to be 100% certain that she is ready. So she doesn't need tube feedings at the moment, but we'll keep the tube in for the time being to be sure she doesn't need it.

I am so stinkin' thrilled that I am even talking about taking out her tube! I can't believe this whole wean is actually happening. Hooray for Elsie!

Monday, June 29, 2015

Tube Wean, Day 7

Wow, I really can't believe that it is Day 7 of our tube wean.

Today went well, Elsie is showing slow but steady progress. Some of the foods she successfully swallowed today were Cream of Wheat cereal, yogurt, ice cream, Nutella, cream cheese and crackers, and Cheeto Puffs. Don't worry, I'm not just feeding her junk food, but we are limited as to what she is able to swallow right now. But every day, she swallows something new, so her abilities are improving, and as they improve, she will be able to swallow more and more foods and different textures.

Heidi is leaving us on Wednesday, so in preparation for her departure, she took the afternoon off and didn't come over for dinner. We were a normal family of four for dinner tonight. Ha ha ... normal. I made sure that Elsie had solid foods to practice chewing, as well as a soft and/or liquidy food for her to successfully swallow. And she did great. I'll be talking to Heidi daily on the phone after she leaves, so we won't be totally on our own, but it's still a tiny bit nerve-wracking to think of her leaving us. But we'll be fine. Heidi always reminds me of how far Elsie has come, even in just the 7 days since Heidi arrived here. Before the wean, Elsie could only take one small sip of liquid at a time. She always seemed to flinch away a bit when the liquid from a cup hit her mouth, almost as if she were scared or worried about what was going to happen if she tried to swallow it. Now, she drank almost an ounce of milk with dinner tonight in one continuous motion. She carried around a sippy cup yesterday while we played outside, and I had to refill it three times. That's never happened!  Each day her swallowing improves, along with her confidence,
and each day she will get better and better.

Oooh, and Elsie pooped on her own today, without the help of a suppository! Yay for poop!

"Ooooh that ice cream is cold! But tasty! See how clean my
shirt is --- I didn't spit out any of this yummy ice cream!"


Sunday, June 28, 2015

Tube Wean, Day 5 & 6

Sorry I missed a day yesterday; I was tired and lazy and yada yada yada!

Let's see, what happened yesterday ... we had pancakes for breakfast, and she tried a few bites and then kept dipping her fingers in the syrup and jam. Sugar is good for you, right?

Uh .... I think we probably had some snacks and then lunch was grilled cheese sandwiches with tomato soup. She is doing pretty good with the soups and yogurts, peanut butter, cream cheese, honey, and nutella, among other things. I know those things aren't exactly the most healthy, but have no fear, we'll expand her tastes from there. It's really a matter of texture and ... melt-ability.

So yeah then we had Chinese food for dinner, because I needed a break, and Elsie went crazy. She was pretty hungry by dinner time, and went nuts with all of that food right in front of her. Lots and lots of tasting and chewing and she was so excited. Elsie loves food!

She's still working on swallowing solid foods. She's not all of a sudden eating and swallowing everything perfectly. But she's so excited to try and is working so hard.

Today went much the same. Lots of chewing and tasting, and doing well with liquid and meltable foods. And we brought snacks for Elsie to church for the first time ever! She ate and swallowed a bunch of Veggie Straws, broken into small enough pieces for her to easily handle them. We also brought a sippy cup with milk and a Gogurt. Elsie ate snacks in church, how cool is that?!

I had a bit of a breakdown this morning. It was a combination of not sleeping well and the stress of everything else. I let Clayton take care of the girls (plus he did the dishes and wiped off the table and counters, and swept the floor, because he's awesome) while I went back to my bed and cried a little. Honestly, this situation has been pretty stressful. Heidi explained to me that most kids get 5 or 6 months to learn the chewing and swallowing skills that we are expecting Elsie to learn in 10 days. It's a lot of pressure for both of us. I have so many doubts and worries, and this morning I let them take control of me. So I had my meltdown, cried to Heidi, and she "therapized" me, as I like to call it. She's fantastic at helping me see the big picture; how far Elsie has come, and how well she is doing, even compared to average children in their program. Something that she later texted me really stuck with me. This is what she said: "God made Elsie's miraculous little body. He provided (the funds) for the wean in an amazing way. He knows her and believes in her." Just what I needed to hear. Then we went to church. My emotions were still fairly close to the surface and a few things really struck me. One particular scripture quote really hit home:

"Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid."

At that point, I realized that I haven't been putting enough faith in God. What Heidi said was right. Heavenly Father knows and loves Elsie. He has brought her so incredibly far. He provided for us to pay for this therapy, through the generous donations of our loved ones. He's not going to bring us this far only to have things not work out. And then I remembered this post that I wrote just over a year ago. That song still touches my heart each time I hear it. "He will feed those who trust Him." I stopped what I was doing and asked myself if I really believed that was true. Do I believe that He will help Elsie eat? I do, without a doubt. 

So I ask for your continued faith and prayers, and I will be redoubling my own faith and prayers, and I know that with His help (and Heidi's!), Elsie will be successful. She has already made such huge progress and is doing fantastically well. I just need to look at the big picture and not be so impatient. I'm going to find His peace, and not be afraid anymore. He will feed those who trust Him.

Friday, June 26, 2015

Tube Wean, Day 4

Today was long but great overall.

Because Elsie's diet has been drastically changed, she has had a bit of constipation (sorry, I talk about poop and vomit on this blog!), so we have been giving her prune juice for the last few days, but to no avail. We resorted to giving her a suppository today and finally this evening, we had a big poop. Hallelujah! We didn't want her to get too backed up because then she wouldn't be wanting to eat. So thank heavens for poop.

Today we worked on taking small bites. If the bites are small, then there is a higher chance of successful swallowing. If the bite is big, it's almost guaranteed that she'll spit it out. So during snack time this morning, we were playing outside and kept offering her small pieces of Veggie Straws, which are awesome because they taste good but they're very dissolvable and easy to swallow. She successfully chewed and swallowed at least 30 pieces of Veggie Straws. We did the same thing with graham crackers and Ritz crackers, and shredded cheese.

For meal time, we followed the same game plan as yesterday: practice chewing and swallowing solids, then follow up with a liquidy food to help her feel full and successful. I tell you what, this kid is getting pretty proud of herself! I love to watch her enjoying food. We had tomato basil soup with cream cheese mixed in for lunch, and it was a pretty big hit.

The best part of our day was going to a concert in the park after dinner. We bought a few chocolate chip cookies from my lovely friend Staci and snow cones to eat while we listened to the concert and played in the park. Get this: Elsie LOVED the cookies! She ATE nearly half of one cookie and the spit out was miniscule. She dug through our diaper bag and found the little container of yogurt that we brought with us, and ate all of that. She slurped up a bunch of the snow cone through a straw, and then accidentally dumped the rest in her lap, haha. She drank a few ounces of milk from her cup that she had insisted on bringing with us.Then she asked for another cookie! We bought another cookie and she was upset when I gave her just a small piece. I relented and gave her a big chunk, and she ate that whole piece, almost no spit outs! Elsie's turning into an eating machine! And I love it.


Thursday, June 25, 2015

Tube Wean, Day 3

I don't want to bore you with too many details of what Elsie did and didn't eat today. It was a good day, very similar to yesterday. Elsie is still working on solids, but is doing very well with liquid and liquid foods. Heidi and I are helping her on each meal to practice chewing and swallowing solids first, and then giving her a liquidy food she can easily swallow to help her feel successful and full.

Heidi has estimated that Elsie took in about half of her normal calories today by mouth, which, considering that 3 days ago she took in zero of her normal calories orally, is pretty awesome. She went crazy today with some cream cheese on crackers, had soup with her lunch, drank a lot of juice and water, and had more ice cream before bed, just to name a few.

Things are going very well, and Heidi is very happy with her progress. She keeps telling me to be patient, which is hard, but she has absolutely no doubts that Elsie will be fully orally eating very soon.

You should see her at dinner. She is chewing and tasting absolutely everything on the table. There is no hesitation, even with foods that she is unfamiliar with. She's not scared of food anymore! We let her stay at the table as long as she wants to, which often ends up being over 45 minutes! She frequently moves from her own plate over to her sister's abandoned plate, and picks at whatever Evje has left behind,.and then on to any serving plates that might have food left on them. There is a huge trail of dropped and spit out food that she leaves behind, but the quantities that she is *trying* to eat and chewing and tasting and *enjoying* are just amazing. She has never been this interested in food, and has never wanted to eat this much. She has never even expressed before ever in her whole life that she was hungry. Now I hear it all the time, ha ha. She's going to figure it all out, soon! This kid loves food!


Wednesday, June 24, 2015

Tube Wean, Day 2

So today was awesome. We're still working on chewing and swallowing solids without spitting any out, but she is absolutely rocking the liquids and soft solids!

Just as a warning, this post is fairly boring as it just lists that foods that she did and didn't eat, but I just wanted to write it all down so that I don't forget!

We had some friends over for breakfast. Elsie chewed and spit out some french toast and sausage, dipped her finger in the syrup multiple times, and then drank about 4 or 5 ounces of orange juice.

We munched on some pickles and crackers, and then we went to the park. Yeah it was super hot today, but we persevered and went to the park anyway. We took along some water and grape juice, peanut butter Ritz Bits, and a little tupperware with peanut butter and a spoon. She really likes the peanut butter crackers, and licked off most of the p.b. and gummed up some of the crackers. She also ate a few spoonfuls of p.b. and drank juice and water.

Lunch was Ramen Noodles aka Crazy Noodles, which Elsie loves, but spits out. There was also a puree fruit pouch squeezy thing, which she was trying hard to eat, but just kept getting too much in her mouth and spit it all out. Then we broke out the guacamole, and it was a huge hit. She dipped her veggie straws and crackers in the guac, and also ate it by the spoonful.

Snack before naptime was a few ounces of milk and several spoonfuls of yogurt, all mostly swallowed with just a few spit-outs. After nap, we had a little snack of grape juice and cheese and veggie straws. She got pretty anxious again before dinner, and I saw my hangry child come out again just like yesterday, ha ha.

When dinner was ready, she dug right in! We had spaghetti and meatballs, plus garlic bread. She loves noodles of any kind, but again, had a hard time swallowing. But the bread was a big hit. She swallowed several small pieces of bread. She's starting to figure out that if she takes small enough bites and chews thoroughly, then she'll be ok to swallow. It's starting to come together! She also ate several spoonfuls of spaghetti sauce, possibly a few small pieces of meatball, and a few ounces a milk. We brought out the guacamole again and she ate several more spoonfuls of that. After dinner, we went outside to play, and she worked her way through another chunk of bread, with most of it going down the hatch! She just keeps getting better at swallowing, one little step at a time.

The girls took a bath and then before bed, we brought out the ice cream. Elsie ATE a whole scoop of ice cream, tipped the bowl to drink the melted remains at the bottom, and asked for more. Not a single bite was spit out! I couldn't believe it! I was too surprised to even take a picture. She went to bed happy, and I am going to go to bed happy. Can't wait to see what she does tomorrow!

Tuesday, June 23, 2015

Tube Wean, Day 1

Today was great! We met Heidi this morning, and she's super nice and fun, and it was so easy for my kids to be right at ease with her. We started out with just getting comfortable with each other, playing outside and blowing bubbles. Then of course, since we had been playing outside in the heat, it was only natural that we go inside and have a drink together.

The rest of the day was pretty relaxed; just doing most of the same thing. We ate when we were hungry, and drank when we were thirsty. There was honestly nothing special or significant about what we did; just that it was all about being natural and calm and not making a big deal of things. We worked to help Elsie become more comfortable with food, and not stress about how much she ate, but just that food and drink are good!

Elsie asked for food throughout most of the day, and whatever she wanted, she got. She chewed up about 6 pickles, a ton of veggie straws, crackers, ice cream, and some other random things. She drank a lot of grape juice (thanks, Grandma Linda!) and some milk and some water. At lunch, we had mac & cheese and applesauce. She loves mac & cheese, but is still chewing and spitting most of it out, She wasn't crazy about the applesauce, but tried it. Then after she had "eaten" a whole bowl of mac & cheese, she asked for a banana, and chewed up almost half of a banana. She's never done that before. Usually it's one bite, spit it out, and no more. But she loved the banana this time and was chowing down on it.

After lunch, we played some more, and she snacked on some veggie straws and graham crackers. Get this: she ATE almost half of a graham cracker! ATE IT!!! Those graham crackers are so dissolvable that they melted in her mouth as she chewed it, and she gummed down half of one without spitting out hardly any!

Before dinner, Elsie was getting really hungry and asking (more like demanding, haha!) for food. She was so impatient, it really reminded me of myself being hangry! So funny. She chewed on some shredded cheese and more banana and some veggie straws while I cooked dinner. For dinner, we had some grilled chicken, potato wedges, and broccoli with cheese. She loves chicken, and chewed it up the best she could, but chicken is kinda chewy, so she didn't swallow much, if any. However, we had fry sauce with the potatoes, and she loved that. She drank more than an ounce of grape juice and almost an ounce of milk with dinner, which is HUGE for her! Then I made a peanut butter banana milk shake, and she drank more than an ounce of that!

We are making so much progress with drinking here; she didn't choke or cough on any of the liquids today! She usually coughs or chokes after the first few swallows, but not today. It was fantastic. So we're going to run with the tasty liquids, and tomorrow will make more milk shakes, soup, and other easily swallowed foods.

Heidi is really excited with Elsie's progress. She said that most kids don't get to where she is until day 4 or 5 of their wean. Her oral motor skills are good, and are improving. She is extremely confident that Elsie will be successful. As Elsie increases her confidence in swallowing liquids, she will progress to swallowing solids. Elsie is trying so hard and is doing fantastic! We had to change her shirt three times today because of all the food she had chewed up and spit out all over. This kid loves food, and I know that soon, she will be swallowing it!

Monday, June 22, 2015

Getting ready to wean

Elsie's tube wean officially begins tomorrow!!! You have no idea how excited I am! I have every confidence that Elsie will be successful with the help of our Speech Pathologist Heidi.

Side note: we've had a lot of people wondering what company we are doing our tube weaning through. After we had initially booked our first therapist from Europe, there were a few issues and we had to break off our contract with him. Luckily, we quickly found Spectrum Pediatrics in Virginia, who have been absolutely incredible to work with, and offered to have one of their therapists come to our home. Same service, different person. Heidi Moreland is our Speech Pathologist who will be arriving in our town tonight, and will start our tube wean tomorrow. We are so so thankful to be working with Spectrum Pediatrics; honestly, they are amazing and I would recommend them to anybody interested in doing a tube wean.

The weaning officially begins tomorrow; however, we have been preparing for it for 5 days now. Last Thursday, we began slowly reducing the amount of food that Elsie gets through her feeding tube. I have been hesitant to share this information publicly, because I'm afraid that people will misunderstand and think that we are cruelly starving Elsie and withholding all food from her. That is absolutely not what we are doing. The amount of calories she usually gets has been reduced. She still gets food through her tube, and her normal amount of water. We are not starving our child. Promise.

Starting yesterday, Elsie starting showing real signs of hunger. She is asking more and more for food to eat orally, which is great. The fact that she is associating food with appeasing her hunger is a huge step. Although we have reduced her tube-fed food, she can have all of the food orally that she wants. She is still chewing and spitting out the food, but is drinking a greater amount of liquids than before with less choking. Elsie is also swallowing more amounts of liquid foods like a pineapple smoothie and a soft-serve ice cream cone. She is trying so hard to eat and wants to eat.

I have every confidence that Elsie will be successful with this tube wean. I know it will be hard for her and for me, but I have no doubt that she can do it with Heidi's help. We can't wait to get started tomorrow!

video

Wednesday, June 10, 2015

Thanks-giving

We met our fundraising goal for Elsie's tube wean, which will take place starting on June 23. We are so unbelievably excited for this to happen! We never would have been able to do this without the help of so many friends, family, and neighbors, as well as complete strangers. I want to take some time and publicly say thank you to all of those who helped us reach our goal.

From the GoFundMe and outside donations:

John & Wendy Casperson
Verla Cooper
Joan Wright
Linda Cooper
Gil & Janice Baker
the Dangerfield family
Mrs Grimm
Kathy Pettey
Jodie Crowder
Steve & Julie Teerlink
Anne and Dave Hansen
John & Nancy Ferderber
Carol Morley
Mike Nesbit
Bertha Hall
Nola Jensen
Amy Garvey
Carol Cheney
Bob & Karen Loutzenhiser
Mary Woodard
Kathleen VonHatten
Michelle Geoghegan
Jessica Wang
Nicole Lynch
Shirley Handy
Betty Koehler
Leo & Elaine Boynton
Mary Bailey
Richard Westover
Savannah Atkinson
Valerie Baugh
Ron & Mary Brunner
Joe Hansen
Karri Sloan
Michelle Shaw
Faye Girsberger
Jenn Schram
Jeff & Carol Call
Terri Critchlow
Teresa Bell
Dorothy Bradford
Dean & Joanne Frandsen
Kathy Mortimer
Carol Brown
Diane Duckworth
Sandy Clark
Juliana Coulam
Neysa Xanthos
Jenny Edmundson
Tiane Allred
Anonymous Anonymous
Patti Smart
Linda Shill
Nancy Miller
Marie Wardle
Jan Peart
Denise Jay
Mark Nesbit
Paul & Diann Macbeth
Arthur & Jenn Westover
Tanya VanPapeveld
Cherry Gardner
Annie Opfar
Lynn Despain
Vicky Todd
Jeff & Kathy Karren
Paige Maughan
Harley Hansen
Tonya Johnson
Joyce Stevens
Rob Pelton
Shannon Clarke
Kitt Ludlow
Mary Mathis
Kathy Newbold
Donna Davis
Sarah & Cameron Sagers
Heidi Gerber
Debenham Fam
Prasha Tuladhar
Dave & Marilyn Gillette
Carolyn Sagers
Carla & Barry Nelson
Laura & Richard White
Jolene Nelson
Lisa Peshell
Andrea McDonald
Teresa Edwards
Allyn Grosjean
Bob & Linda Westover
Lucy & Glen Greager
Roberta Macdonald
Debbie Smart
Lesa Gallegos
Brittany Lund
Jana VanDenBerghe
Joseph & Millie Sagers
Christel Longoria
Molly Anthony
Kristin Vinik
Jenny Lake
Suzanne Lynch
Rayetta Croft
Randall Hunsaker
Tami Higbee
Shani Fisher
DeeAnne Squire
DeAnn Butler
Sage Kotsenburg
Thad LeVar
Heather Maile
Heather Buttars
Carrie Wareck
Jared Shimanek
Aileen Cawley
Lorna Kimball
Jen Williams
Ashley Eves
MM Cary
Joe McKay
Audrey Parker
Shannon Hill
Grace Baker
Kathryn Gnagey
Clay Westover
Melissa Wright
Dawn Wells
Christy Shepherd
Megan Matthews
Cathy Bird
Lori Kennedy
Tiane Allred
Kristen Openshaw
Svetlana Konakova
Karen Pelton
Nate & Deanna Warner
Anne Hansen
Jan Schalk
John & Roxy Glassey
Donna Baines
Ashley Kirkpatrick
Ilse Wilson
April & Tom Bishop
Charlotte Greager
Rebecca Simmons
Candace Johnson
Karri Sloan
Jessica Cole


From the Bake Sale, I wish I could thank all of you in person, but there were so many who came and helped. We are so grateful for everyone who helped and who came to make purchases, despite the pouring rain. We were so amazed by the generosity of so many good people.

A special thanks goes to:
Vicki Lambert
Tami & Nate Higbee
Kadie & Claire Nielson
Steven Sharp Nelson
Lorna Kimball
Audrey Parker
Ashley Kirkpatrick
Trish Judd
Marlene Feveryear
Megan Greenwood
Stacey and Kate Timmerman
Jessica and Tyler Cole
Carla and Jennae Nelson
Kathy Newbold
Penny Taylor
Amy Timmerman
Eric Westover & Family
Bob & Linda Westover
Rachel Kartchner
Brenda Westover
Rhonda & Roberta, who were there in spirit
Christina Coleman
The Mossman family
The Blackhurst family
Holly Davies
Jeni Larsen
Blackhurst family
Mossman family
And of course, last but not least is Riley and Ramona Mathis, who did the brunt of the work and made this fundraiser become a reality! We never could have gotten this far without you.

So many people have come together to help us with our burden. Friends, family, neighbors, people that I haven't seen in years, old and true friends, people from my childhood, friends of friends and friends of family, plus complete strangers. We are so extremely thankful. There are so many good people in our lives! We are so blessed. We'll never be able to say thank you enough but your kindness and love will not be forgotten.

Elsie's feeding tube wean will begin on June 23. We don't have specific details yet, but will share them when we know. I will post updates throughout the wean on how things go. As the date gets closer, I keep thinking of things that will change when Elsie doesn't need her feeding tube anymore. I'll have a whole shelf in the freezer and in the fridge that will be empty. No more daily blending of her food. No more cleaning up messes that she has chewed up and spit out. No more unexplained vomit. The day is drawing near, and it will be a fine day when Elsie can eat on her own.

No more wrestling with tubes in tummies!

One day, no more button in belly.


Monday, April 13, 2015

Why we want to wean

We are preparing Elsie to do an intensive home-based tube weaning this summer. It has been on my mind nearly constantly for the last several months as we have researched and made plans. I have found myself asking myself why exactly I want Elsie to be weaned from the feeding tube, and these are some of my thoughts.

I can handle blending her food. This part I actually like the most about her feeding tube, knowing that I am blending good, wholesome, nutritious food specially for her. Yes, it is expensive, as I try to buy fresh produce as well as foods that are high in calories but that are also nutritious, such as avocados, nuts and seeds, and dried coconut strips, just to name a few. Yes it takes a lot of extra work and planning on my part, to make sure that we have enough blended food on hand for her every single day. Yes, we have to bring her specially blended food with us if we are going to be away from home for more than a few hours. Yes, my children tend to run from the kitchen when I turn on our amazing high-powered blender because it is incredibly loud blending up roast beef and frozen vegetables. But we can handle it.

I don't love the staring and strange looks we get from people when I feed Elsie in public, but I can handle it. I don't love feeding Elsie while we're at the zoo, and getting stares from grown ups who should know better. I don't love feeding Elsie at McDonald's, and having a ten-year-old child stand staring with her mouth gaping open, staring at us for a good 3 minutes or so. Whenever possible, I try to feed her before we go out to avoid the stares, but we can't always do that. I know that people don't get it and are trying to figure out what exactly I am doing to Elsie when I feed her, and they don't mean any harm. I don't love Elsie being a subject of curious, staring eyes while I feed her through her tube, but I can handle it.

I don't love her making huge messes whenever she attempts to eat orally, whether it be at home or at someone else's house or at a restaurant with the family. Elsie tastes food and chews it sometimes, but always spits out the remainder before it can be swallowed. This means she gets spit-out food on her clothes, on the table, on the floor, everywhere. Plus, like most toddlers, often she will have a snack with her as she plays around the house, which is fine, but this means that we have little trails of spit-out food all over the house. Luckily, we have two very nice doggies who take advantage of this situation and are constantly following Elsie around, licking up most of her rejected foods. But when we're away from home, we don't have instant doggie clean up. When we don't remember a bib, or when she rips off her bib after 30 seconds, the spit-out food gets all over her clothes. It's gross, and it's messy.  I don't love it, but I can handle it.

What I can't handle anymore is the vomit. I've come to acceptance with the stained clothes and ruined bed sheets. I can deal with scrubbing carpets and mopping floors. I can handle all of that. But my heart hurts for Elsie when she vomits.Throwing up is such an unpleasant experience for everyone nearby, especially for the one whose stomach is doing the food rejection. Can you imagine how it would feel to vomit multiple times a week, every single week for your entire life? It's horrible for her. My heart breaks a little each time she pukes. Every time she throws up, it's that much harder we have to work to get her comfortable with food. Would you want to eat if you were constantly barfing? Would you want to taste new foods if your mouth was used to tasting unpleasant regurgitated food and stomach acid?

Elsie's own sister, who loves Elsie dearly, understandably doesn't want to be around Elsie when vomit is imminent. Evje doesn't like taking baths with Elsie anymore, because of the chance of a "barf'-bath" happening. She runs away and sometimes even screams when Elsie is next to her and throws up. She tells people she meets that Elsie doesn't swallow food and throws up a lot. If Elsie's own sister acts this way, can you imagine how it will be if Elsie is 5 or 6 years old and still has a feeding tube in school? Can you imagine how the other children will treat her when she throws up in school all the time? Nobody is going to want to be around her. No 6 year old wants to be friends with a chronic puker.

The other factor that is closely tied to the vomiting is Elsie's weight gain. I dread going to the pediatrician or any other appointment, knowing that she will be weighed. I hate putting Elsie on the scale and waiting with dread to see what number will pop up on the screen. I hate the feeling of disappointment I get from her doctors and therapists when her weight gain is minimal. Elsie has such a hard time gaining weight, first of all because she was born 17 weeks early, and second because she vomits all the time. I try my best to blend high-calorie, high-fat nutritious foods to help her gain weight, but I can't keep her from throwing it up. I have such a feeling of helplessness whenever she vomits the food I have spent so long researching, purchasing, preparing, and blending.

So how is weaning from the feeding tube going to stop her vomiting, you might ask. Great question. The majority of Elsie's vomiting arises from her gag reflex. After spending 160 days in the NICU with tubes constantly being put down her throat, gagging is what Elsie learned to do when something goes down your throat. She literally does not know how to swallow food without gagging, and consequently, throwing up. She is making very slow progress, and will swallow small amounts of liquids, and occasionally tiny bits of things like yogurt or ice cream. She also throws up a lot when she is sick and has increased nasal mucus in her throat. Once again, she doesn't know what to do with this stuff in her throat, gags on it, and vomits. When she weans from her tube and learns how to eat and swallow, her overactive gagging will decrease significantly. Other parents with children with similar gagging and vomiting problems have reported that their children have completely stopped gagging and vomiting just days after beginning a tube wean.

Those are a few of my somewhat unorganized thoughts. I want to wean her from the feeding tube to help her stop vomiting, which will greatly increase her quality of life. I want to do it because I know it will make her life so much better. I can handle everything else. I want to do it, for Elsie. She is ready, and I know that she can do this, with the right help.

Please help us stop the vomit! Support Elsie's fundraiser at www.gofundme.com/helpelsieeat




Saturday, March 14, 2015

Living with a Chronic Vomiter

After a few random events this weekend, my mind started to wander about what it's really like to live with a Chronic Vomiter; that is, one who vomits all the time. I decided to write down my random sardonic thoughts about our experiences thus far. PS, if you are weak of stomach or don't like reading about puke, this post is not for you! Seriously though, it is pretty gross. Don't read if you don't want to!

Here are several things that you might not have thought about before unless you live with a puker.

1. Dogs are our friends. I know you probably think it's disgusting, and it is, but our dogs have helped cleaned up Elsie's puke so many times. They only have to hear her start gagging or choking, and their ears perk up, and they come a-runnin'! My sister-in-law once asked me what was the best way to get vomit out of carpet, and no joke, I told her to get a dog to lick it up. Have the dog lick up the bulk of the puke, and THEN you can spray it with a carpet cleaner of your choice. Save yourself some paper towels/rags by letting the dogs do the dirty work first.

2. Speaking of paper towels, here are a few items that a Chronic Vomiter family should invest in, because you'll use more than you ever could imagine: Paper towels. Carpet cleaner. Laundry detergent. Stain remover for clothes. Stain remover for carpets. Possibly a heavy-duty carpet steam cleaner. Bibs that not only have that cool big pocket at the bottom to catch puke, but also are made of vinyl/plastic-y material that can just be rinsed off in the sink. High chairs/kitchen chairs that have very few crevices or carved designs or intricate wood work or anything frilly that would be a difficult place to wash vomit out of. You definitely don't want chair cushions or any kind of fabric material on a high chair, because you don't have time to be washing those every other day. Our high chair is a fairly stark, no-nonsense, no frills chair that is easy to take outside and hose off, if necessary.

3. Another issue is finding clothes that easily hide vomit stains. You know you live with a chronic puker when, whilst shopping for clothes for said puker, one of your main considerations is: "How well will this material or pattern hide a vomit stain?" You definitely steer away from whites, light yellows or pastel pinks, and tend to buy lots of navy blues, purples, blacks, or anything with a busy pattern where a puke stain just might go undetected. Around our house, anytime Elsie wears a plain white shirt, it is generally for an outing or special event like church or other formal occasions. She wears it to said occasion, and then we immediately change her shirt; sometimes even before we get in the car to go home. White clothes don't stay white around here for very long.

4. Another indicator that you might live with a puker is when your own clothes are splattered with vomit, and you either don't notice, or don't care, or all of your other clothes have vomit stains on them and these ones you're wearing just happen to be the cleanest of the bunch.

5. You become adept at catching barf with a cup. Or, when you are in a new location with your puker, you scout out the area ahead of time to find the closest garbage can in case vomiting should happen. There has been a time or two when, whilst eating dinner together, I could tell Elsie was about to throw up, and so I chugged my glass of milk as quick as I could in order to have an empty vessel in which to catch her vomit. I nearly always succeed.

6. You revel in the fact that the majority of your house is NOT carpet, because the less carpet there is, the less carpet-scrubbing you have to do. I can't tell you how many times I have grabbed Elsie and ran out of the bedroom in order to try to get her puke to land on the floor in the hall, instead of on the bedroom carpet.

7. You have instilled a bedding system where you layer the puker's bed like this: a normal fitted sheet on top, then a waterproof sheet or waterproof layer of some kind, followed by another normal fitted sheet under that, then another waterproof sheet under that. That way, when somebody throws up in the middle of the night, instead of stripping the bed and putting on clean sheets, you simply have to strip off the messy top two layers, and voila! you have a fresh clean layer underneath, waiting to be slept on.

8. Vomit honestly doesn't gross you out anymore. I mean, yeah, it's repulsive and usually smells bad, and I wish more than anything that it didn't happen. But it really and truly does not gross me out in any way. It is simply a fact of life, for the time being. Elsie's puke is actually not that gross because all her food is pureed, so there are no disgusting chunks or mysterious elements that make me wonder what on earth my kid was eating. And she generally (but not always) throws up right after or during a meal, so there is not a ton of nasty-smelling stomach acid yet. An oral-eating person's vomit is so much more gross, because there are chunks and lots of acid. Chunks are disgusting.

9. You write an entire blog post about puke without batting an eye. Is anyone still reading this? I'm sorry. It is strangely cathartic for me to write about our puking experiences in a somewhat joking manner. I know vomit is revolting. I hate it more than anything about Elsie's feeding condition. Each time she throws up, I feel defeat. I feel defeat when her body rejects the nutritious food that I spent time and effort to make and blend specially for her. I feel defeat that it is one more negative oral experience for her to go through. I feel defeat and immense pressure that she has not gained any weight in the last six months of winter, because of vomit. I know I've said it before, but sometimes people don't understand: when Elsie gets a simple cold, the congestion makes her puke. She simply cannot tolerate the excessive mucus that goes down her throat, or the mucus that she coughs up. It makes her vomit. Coughing too hard makes her vomit. Because she has had so many colds and illnesses this winter, she has not gained any weight. She hasn't lost any weight, thank heavens. Every time she vomits, I feel defeat that the nutritious, high-calorie food I make for her isn't going to have a chance to add some weight onto her tiny frame. So here's hoping that with the arrival of spring time, Elsie will catch a break from the relentless cold/flu season, and stop vomiting long enough to gain weight.

I was going to end this post with a picture of Elsie after she had thrown up all over herself and the car seat, but let's be honest: ain't nobody wants to see that!

Friday, February 13, 2015

First hospitalization since NBICU

This winter has been rough .... Elsie has had cold after cold after cold. Luckily, she has never had anything worse than a cold/cough, but it's still not fun. Elsie hasn't gained much if any weight for a month or two, because each time she gets a cold, her vomiting increases from excess mucus and coughing too hard. We are hoping that once cold and flu season is over, she will be able to gain some much needed weight. RSV is currently "very high" in our area, and other respiratory viruses are "high", so it looks like we might be skipping nursery for a few weeks to keep Elsie healthy.

On the morning of Monday, February 9, Elsie coughed up some phlegm that was bloody. It wasn't  really bad, but I know that it's not normal, so I called and left a message at her pediatrician's office. When they returned my call, they said that yes, they'd like to see Elsie, but they didn't have any openings until 5pm. I almost didn't take her. She seemed to be doing fine, and there had been no more blood. But luckily, I took her in anyway.

When we got to the ped's office, they put a pulse ox monitor on her foot (which she hated, by the way, it must have reminded her of when she had them on her feet 24/7). Her oxygen saturation levels were only in the high 80s. Occasionally it went up to 90 or 91, but never higher. Ideally, normal oxygen levels range from 92-100% saturated. The higher the number, the more oxygen your lungs are receiving. They gave her an albuterol breathing treatment, and then put the pulse ox back on. No change. Still in the mid- to high-80s. Given Elsie's medical history of prematurity, intubation, steroid treatment, and Chronic Lung Disease, they immediately hooked her up to an oxygen tank and sent us on our merry way to Primary Children's Hospital. The thing is, before we went to the Dr's office, I had no idea that her oxygen was low! I'm so glad I took her in to get checked out.

The breathing treatment, aka elephant nose, at the ped's office


By the time we got to the ER at Primary's, it was about 9pm. There were TONS of people in the waiting room. We got taken back to an exam room relatively quickly, and they took a culture from her nose to be tested to see if she had anything that could be identified. She was hooked up to their oxygen and a pulse ox, which had a monitor just like the one Elsie used to have in the NBICU. Oh, those dinging alarms are sounds I will never forget. Anyway, they hooked her up, took the swab from her nose, and then we waited. And waited. And waited. Various people came in intermittently, but for the most part, we were alone and bored. Because Elsie was hooked up to the oxygen and pulse ox, she only had about a 3 foot radius of where she could go. Entertaining a 2 year old in a small exam room with very little to play with for more than three hours left us very bored. There came a time when Elsie discovered the box of kleenex, and tore out every single one of them, and I didn't even care. Not one bit!

In the ER exam room, right before the kleenex started flying around the room

Because Elsie was being really wiggly and not holding still, the pulse ox was having a hard time reading her, and the alarms kept going off that she was desatting. Not a single person came in to check on her when the alarms went off. Having had experience with the pulse ox monitors in the NBICU and at home, I knew she wasn't really desatting, but what if she had been?? None of the nurses checked on her to make sure she was ok. I was pretty annoyed, but I know they were really busy, so I tried to be understanding. But I was annoyed because I had no idea what was going on or why were waiting for so long. No one was telling me anything. And I really had to pee.

Right around 12:30 in the morning, a nurse from the third floor came down to get us, and we were getting admitted to the hospital for the night. Apparently the ER nurses/transport people were too busy to bring us up, so they had to come get us. Up we went to the third floor, Children's Medical Unit. They brought us into our room, and right away, I knew there was a problem. There was only a hospital bed! No crib! Ok, I know Elsie is two, and most two year olds are not sleeping at cribs anymore, but guess what, I don't care. Elsie still sleeps in a crib, and I have no desire at this point to move her to a toddler bed. She has never once tried to climb out, unlike her big sister, who was climbing out/falling out regularly since she was about 16 months old. Anyway, I told the nurse that there was no way Elsie was going to sleep in that giant hospital bed all by herself, and that we were going to need a crib. Luckily, a crib was available.

So then, we had to be examined by our new nurse, then a 1st year resident, and later still, a third year resident. I had to give a lengthy medical history to the third year, and she and the nurse were of course very impressed with Elsie and her amazingness. After all of the examinations, explaining things, and more waiting, they finally left us to go to sleep at 2am. Elsie was exhausted, I was exhausted. Luckily she quickly went to sleep. Unluckily, the nurse had to come in at 4am to check vitals, and that of course woke the both of us up. Elsie had a hard time going back to sleep after that, and I was having a hard time sleeping as well, The nurse came in again to do vitals at 8am, which woke Elsie up for the rest of the morning, and she was pretty grouchy. But the good news is that the tests from her nose culture were all negative, so it was likely just a bad cold that settled in her chest. No scary RSV or influenza or other nasty viruses. She was doing great with her sats, so they turned off her oxygen at that time, and left her on room air to see how she would do.

The rest of the day, we sat around and played in a two foot radius. Elsie kept getting tangled up in all of the cords, and the wires from the leads that the nurse placed on her chest kept getting caught on Elsie's gtube. It was frustrating. Luckily, we had an awesome visitor come and hang out with us, and she also brought me lunch. Thanks, Auntie Mona!

Ooh, that reminds me, I almost forgot to talk about the food! Ok, so the pediatrician sent us straight to the hospital. I wasn't able to grab any of Elsie's food from home to bring with us. I didn't know what Primary's policy was on Blended Diets, but I had previously heard mixed reports from various tubie families around the country; some hospitals are pro-BD, some are not. I had sort of resigned myself to the fact that we'd probably just have to feed Elsie formula for the day. Imagine my surprise when the dietitian brought me an entire menu of foods I could choose from for the kitchen to blend up for us! It was great, because that means that BD is becoming more of a normal thing. Nobody blinked an eye when I told them Elsie was fed BD. It was fantastic!

This is Elsie not wanting to take a nap in the crib.

Alright, so this blog post is getting just about as long and boring as was our hospital stay! Let's wrap things up. Elsie had been on room air (no supplemental oxygen) all day. The doctors wanted Elsie to take a nap so that they could observe if she could maintain her oxygen levels while she slept. Elsie, however, did not want to take a nap. We finally got her to lay down, and just when I thought she was asleep, her little head pops up, looking for me, and she starts crying. Repeat multiple times. After trying to get her to sleep for what seemed like an hour, I sat with her and rocked her in the rocking chair, and she finally fell asleep.

At this point, it was just me and Elsie. The battery on my tablet died and I couldn't reach the charger without disturbing Elsie. I didn't have anything else within reach to entertain myself. So I simply watched her sleep. I saw the sticky marks left on her face from the tape the ped used to tape the cannula to her face. I saw her beautiful eyelashes laying against her cheeks. I stroked the curls at the back of her head. I watched her breathe. And suddenly I was reminded of this moment:


 The very first time I held my little baby. 


She nestled up against my chest, light as a feather. And her mouth gaped open, like a little baby bird, and that was her nickname for a while. Baby Bird.

And here we were, again in the hospital, tangled up in cords and wires just like the first time I held her. Her mouth gaped open as she slept, and she was my little Baby Bird once more.

After a nice long nap with great oxygen sats, the nurse came in with our discharge papers, and we were free to leave. Hopefully we won't have to experience a hospital admission again any time soon. We finally arrived home, were greeted joyfully by Clayton and Evje and were sweetly reminded that there's really no place like home.

Saturday, January 17, 2015

2 years old!

Holy moly, Elsie is two years old!

It's so crazy to think that two years have already gone by since little "Thumbelina" came into our lives.



A lot has happened since Elsie turned one. When she was 12 months old, she had just begun sitting up, was scooting around backward, and learned how to transition from laying down to sitting up, and from sitting up to scooting.


One year later, Elsie is walking, jumping, climbing on and off of furniture, throwing balls, coloring on paper (and walls!), and so much more.


Elsie's expressive language has really improved since our appointment at the Neonatal Follow-up Clinic in October, where the language pathologist said that she was mildly delayed. She went from saying just a few words and animal noises to really communicating. She says more and more words each day. You can't imagine the feeling I had the other day when she crawled into my lap and in a sing-songy voice, kept saying "I love you! I love you!" It was so tender!

Elsie's oral eating skills are still coming along slowly. Some days are better than others. Occasionally she'll taste AND swallow a few bites of something like yogurt or ice cream. She's definitely more interested in food, and enjoys tasting it, chewing on foods, and then spitting them out. She knows where the snacks are kept in our house, and will ask for them. So, even though progress is slow, it is still progress.

We had a fun family birthday party for Elsie this weekend. It was a "Frozen" themed lunch, complete with "Troll balls", "Frozen hearts," and "Olaf noses", to name a few (meatballs, white chocolate-covered strawberries, and carrot sticks with dip). The blue slush recipe I got from Pinterest was a definite "Pinterest Fail"; in case anyone was wondering, frozen blue jello does not make a normal-textured slush. Besides the blue jello slush failure, the party was lots of fun! We decorated snowflake cookies and made snowmen with marshmallows. We loved having our family over to help us celebrate!

Elsie's two year Well-Child Check went well; our pediatrician continues to be very pleased with her progress. She's still just a smidge away from being on the weight chart, but with as many colds and coughs that she has had so far this winter, we are basically maintaining her weight right now and not gaining a ton, because of all the mucus-induced vomit. So hopefully, once we get over cold season, things will start picking up in the weight department. Elsie is right between 20 and 21 pounds, and is about 32 inches tall. We also had a check-up with the opthamologist a few days ago. Elsie is still slightly near-sighted, but not enough to warrant getting glasses again at this time. She'll go back again for another check-up in a year. Hooray!

You know, there's rarely a day that goes by that I don't watch this child in wonder, just with amazement at the obstacles that she has overcome. Our lives could be so, so different. She is truly such a blessing in our lives, and a constant reminder of the power of the priesthood, of faith and hope, and of miracles. We love you, Elsie! Happy second birthday!