No more tube!

Friday April 22 finally arrived. This was the happy day that Elsie's gtube was permanently removed! After speaking to our GI doctor late Thursday night and finally receiving permission to remove her tube, I was so excited that I almost wanted to wake her up and take it out right then. But I restrained myself and somehow waited until morning. By some cruel irony, that day just happened to be a rare morning that Elsie slept in until after 9am, haha. She finally woke up and I waited until she had used the bathroom and had a few bites of breakfast before springing the good news on her. 

Our feeding therapists had both warned us that removing her tube might be a little traumatic for Elsie. After all, she has never known life without it. It is a part of her body as much a finger or toe is, so to suddenly remove it might be hard on her. Not painful, mind you, just different and strange. We have been talking with Elsie for the last few months about when she gets her tube out, and talking about how she doesn't need it anymore, but I don't know if she really understood that it would be coming out, for good. So I was a bit apprehensive that morning when I collected all of the supplies I would need to take her tube out. Some parents with tubie graduates suggested having a new, clean gtube available to put into a stuffed animal or doll if the child was upset about losing the tube from their body. I grabbed a new gtube button, a few pieces of gauze, some medical tape, scissors, and a syringe. 

This is what Elsie's Mic-Key gtube button looks like:

The feeding port and balloon port are the parts that are outside her body. The stem of the gtube goes through her stoma (hole in her skin) and into her stomach. It is kept in place by the small, water-inflated balloon that is inside her stomach. The balloon, if properly inflated, keeps the gtube from being pulled out of the stomach. When you want to remove the gtube, either for replacing an old tube with a new one, or to permanently remove the tube like in Elsie's situation, you take a small syringe and attach it to the balloon port. You draw all of the water out of the balloon, and the balloon deflates and shrinks in on itself, and all you're left with is the narrow stem. The stem is easily pulled out of the stomach because there is nothing holding it back now that you've deflated the balloon. It's actually pretty easy to do. 

Once I had all of the supplies ready, I sat Elsie and Evje down and explained to them that the doctor told us we could remove Elsie's tube. I tried to make it a positive, exciting thing. I could tell Elsie was a little bit wary, but with my excitement and Evje's help, she let me lift up her shirt. I deflated the balloon inside her stomach, and gently pulled on the tube. There was a small amount of resistance, but then it came right out. I cleaned her stoma with some water, then rubbed some Vaseline on the surrounding skin and taped a piece of gauze over it to contain any stomach contents that might leak out. We cheered and celebrated, and took many pictures of the special occasion. I offered the new gtube button to Elsie and asked if she wanted to put it in one of her dolls or stuffed animals, but she said "No, I don't need that anymore!"

Last picture of the "tummy tube"!

It's out!

Generally speaking, a gtube stoma closes quite rapidly if the gtube is not in place. It's like when you have your ears pierced, but you don't wear earrings for a long time, and the hole closes. But with a gtube stoma, the closing of the hole happens a lot more quickly. If a gtube is ever accidentally removed, it is advised to get it back in within 20 minutes of removal, because it really does start to close that quickly and becomes very difficult to get back in without medical help. Elsie has had her gtube for almost 3 years, so there was some concern that her stoma wouldn't close all the way on its own and that she would need a surgeon to stitch it shut. However, Elsie's stoma has always been very clean and never irritated; she never had any issues with granulation tissue or other problems that might delay the healing of the stoma. I was pretty confident and hopeful that it would close on its own, but I kept a close eye on it for the first several days to make sure that there was no stomach acid leaking out and that Elsie's skin was protected. 

24 hours post-removal

It is now more than 2 weeks post-removal, and it appears that her stoma is completely closed on its own! She had a very very small amount of leakage during the first hour or so that the tube came out, but none since then. It looks like she has a second belly button where her tube used to be. We're so very proud of Elsie's accomplishments in graduating from her feeding tube, and we love to let her show off her tube-free tummy to all of our friends and family. I'm so happy that Elsie has finally reached this great milestone in her life! She is now free from all medical devices. All that's left is her scars, that remind us of all that she has been through, and all that she has overcome. Elsie is one tough little cookie!

Getting permission to remove the tube!

For some time now, we have been really wanting to take Elsie's gtube out. I wanted it out a month or two after we weaned from the tube back in July 2015, but our doctors were very cautious and wanted to make sure that Elsie could be successful without it. Some criteria for being able to remove a gtube is eating 100% orally for at least 3-6 months depending on the doctor, consistently gaining weight, and able to maintain hydration during an illness without needing to use the feeding tube. Most doctors also prefer the gtube to be left in during cold and flu season, because often a serious illness will cause the child to have a setback with eating and drinking.

Elsie has been eating 100% orally since July. We went through several colds and minor sickness throughout the winter, and then Elsie was hospitalized for 3 days in February for a respiratory virus. During none of these illnesses did Elsie need supplemental food or fluids through her gtube. She was even able to swallow medicine orally while she was in the hospital. The only factor that we were somewhat struggling with was Elsie's weight gain.

Elsie is like her older sister Evje, in that both of them eat enough to survive, but not a whole lot more. They eat to live, not live to eat. To my children, eating is sometimes regarded as a chore to get through before they can go play. They enjoy eating and they like food, but they often only eat enough to abate their hunger before they are off, burning more calories than they have taken in. Both girls are very active; non-stop on the go wiggle worms. It's not a huge surprise to me that Elsie's weight gain has been slow. BUT although it has been slow gain, she IS gaining weight. She has remained on her own curve on the weight chart.

After cold and flu season was over, I began to pursue getting Elsie's gtube removed. I wasn't quite sure who was the authority that had the final say on when it could be removed. Elsie's feeding therapists know her the best, but they are not doctors. Our new pediatrician is great, but when I asked about removing the tube at Elsie's 3 year well-check in January, he referred us to the GI doctor who placed the tube. This was frustrating to me, because we haven't been seen by GI since a few months after Elsie's PEG tube was replaced with her Mic-Key button ... so sometime in the fall or winter of 2013. At that time, he told us that he didn't need to see Elsie again unless we had problems with the gtube, which we haven't, so he hasn't even seen Elsie since she was like 9 months old. Why did he have the authority to tell us that we could remove her tube when he is so unfamiliar with her case? Who knows. The medical world is confusing and frustrating.

Let me just insert here that removing a gtube is not a complicated procedure. I have done it myself at home several times, because gtubes don't last forever and need to be replaced periodically. I was fully comfortable removing her gtube myself, and contemplated taking it out on our own and not telling her doctors that we had done so. The only thing holding me back was that if her stoma (hole where the gtube goes through her skin and into her abdomen) doesn't heal on its own, it would need to be stitched shut by a surgeon. And since Elsie has had her gtube for almost 3 years now, there is a stronger possibility that her stoma won't close on its own and would need the surgery. I've read a few stories of kiddos whose stoma did not close, and there was much leaking of stomach acid and breaking down of skin, and other really awful things. So while I rebelliously wanted to remove her tube on my own, I refrained.

In March or April, we had a lovely informal visit with our wonderful friend Helene, who was Elsie's feeding therapists previous to the tube wean. We had lunch together, during which Elsie ate a small bowl of tomato soup, two slices of French bread with butter, two cheese sticks, a few bites of Caesar salad, and a package of fruit snacks. It was awesome, and Helene was quite impressed. Helene and I discussed removing Elsie's tube, and she kindly volunteered to send a message to our GI doc, relaying how great Elsie was doing with her eating skills.

GI's response was that Elsie hadn't gained enough weight to remove the tube. The last time Elsie had been weighed was back in February ... when she had been hospitalized ... when she had been very sick. So yeah, at that time, her weight was probably down from what it normally was. Grrr.

At the end of April, Evje had her 5 year old well-check, and while we were at the pediatrician's office, I plunked Elsie on top of the scale to get a current weight. I discussed again with the ped the possibility of removing the tube. He was supportive of it being removed, and told me to talk to GI again, letting him know that our ped was supportive of the tube being removed. AND the last thing he told me was that if our GI doc did not agree with him that it was time to take the tube out, that I should let him know, and that he would find another GI doc to approve the tube's removal. Whaaaa?? Oh yes, this is so going to happen, finally!

I called GI that afternoon, leaving a message with the nurse, laying out all of our arguments as to why we believed her tube was ready to come out. Elsie had not needed her tube for eating or drinking since July, she made it through a 3 day hospitalization without needing her tube, and I told them what her current weight was and that our pediatrician was supportive of the tube coming out. This was on a Thursday afternoon, and I was not even expecting a response until the following week at the earliest. However, later that very same night, GI doctor personally called me! We discussed all that Elsie had been through and how she was succeeding. He said that now that he knew her current weight, she had gained enough for him to be comfortable removing the tube. He offered to set up an appointment to remove the tube in his office the following week, but I asked instead if I could remove it at home, to which he readily agreed. He let me know that they generally give the stoma a few weeks to close on its own, and to let him know if we needed a referral to surgery to get the stoma closed surgically. And that was it! We finally had our much-sought after approval to remove the tube!

After the hospital

After we were discharged from the hospital, we were brought an oxygen concentrator by home health. Luckily, the oxygen concentrator has 50 foot long tubing, so that Elsie wasn't confined to a 2 foot radius while hooked up to the oxygen. She was able to go almost everywhere in our house. It was still fairly annoying, because the tube connectors would get caught on things, and she'd get stuck. And we all tripped over the tubes once or twice. But whatever we have to do to help her breathe, we do, so we dealt with it.

We had a follow up appointment with our pediatrician on Thursday, and he checked her oxygen sats to see how she was doing. She was still showing up in the mid 80s, even with her oxygen on, so I'm pretty sure that the reading was off. He wrote us an order for a pulse oximeter, so that we could monitor her sats at home and try to wean her off the oxygen. When the pulse ox arrived, her sats were in the low 90s, and have been getting better every day. By Friday, she went the whole afternoon without 02. We put it back on when she went to sleep that night, because it's typical to de-sat while you're sleeping. And she has been fine without any supplemental oxygen since then. I'm so relieved that she was able to get off the oxygen so quickly, even though it didn't seem very quick to me at the time.

Here's a few more tidbits about our hospital stay that I want to write down before I forget. The nurses all thought Elsie was completely adorable, because I would ask her if she wanted a drink or some food, and her response would either be "Yes please," or "No thank you" in her cute little voice. Even when she wasn't feeling well, she was still polite. Also, there were several times when I would ask her what she needed, and she would say "I need you, mommy". I slept next to her in the hospital bed each night, and she would frequently reach out to touch my arm to make sure I was there. Isn't that the best feeling in the world, to be just what your child wants?

We had several fantastic nurses and techs who took great care of us. One of the nurses was a girl I knew from high school! Ashley Hatch is her name. I'm so thankful to live close to a great facility like Primary Children's, where I know that Elsie will receive the best possible care. The hospital food wasn't so bad, and the facilities in the Ronald McDonald family room, where I took a shower, were awesome. Wish I would have known about that place sooner. In conclusion, they took great care of us, but we're ever so happy to be home.

I would like to make note that throughout her illness and hospital stay, Elsie was able to eat and drink enough by mouth to stay hydrated, and did not need any additional fluids given to her through her gtube or through an I.V. I'm so extremely proud of the progress she has made, and I knew that she would be ok with her oral intake, even if she got sick. Now if we can get her to chunk up a bit more, then we can get her gtube permanently removed. I can't wait for that day!

3 day hospitalization

It all started last week, when Evje was getting over a cold/cough, and Elsie was starting to cough a bit here and there too. Friday night, both kids had been in bed for a few hours when we heard crying. Clayton went upstairs to check out what was going on, and found Elsie coughing so hard that she was having a hard time catching her breath between coughs. She felt quite warm and fevered, and was coughing a lot, so we calmed her down and doctored her up, and then I let her sleep in bed between me and Clayton so that we could keep an eye on her. We discussed taking her to the emergency room, because I could tell this wasn't just a cold, but decided in the end to try and get some sleep, and see how she was doing in the morning.

After a mostly sleepless night, Elsie woke up Saturday morning feeling fine. Her fever was gone, coughing was minimal, and she ran around the house playing. Unfortunately, as morning turned into afternoon, I could tell she wasn't feeling well. She was clingy, a bit lethargic, and her fever and coughing came back. I decided that, rather than take her to the ER in the middle of the night when she got worse, I would be proactive and take her to the InstaCare now.

I just want to say that I normally am not the type of mom who takes her child to the InstaCare or ER for a cough and fever. I tend to make Evje tough it out when she's sick, unless things get really bad, because it's usually a virus and there's nothing to be done except tough it out. Does that make me sound like a horrible mom? I promise I'm not. But with Elsie ... I get worried more easily. I could tell something wasn't right this time, so I went with my mommy gut and took her to the InstaCare.

After a very brief examination, the doctor thought that Elsie might have pneumonia, and told us to take her to the ER. We went home, I grabbed my phone charger and my toothbrush, just in case we had to spend the night, and headed in to the ER at Primary Children's Hospital.

I was pretty worried that our ER visit would be like the last time we came here, just over a year ago, when we had to wait in the ER exam room for over 3 excruciating hours before they admitted us. Luckily, this time the ER wasn't terribly busy, and we only had to wait in the exam room for maybe an hour before being admitted. Elsie actually fell asleep in my arms while we were waiting, so I could tell she really didn't feel good. She wasn't keeping up her oxygen saturation levels very well on her own, so they hooked her up to supplemental oxygen. I've explained this before, but I'll explain again. Normally, your oxygen levels range from 92-100% saturated; the higher the number, the more oxygen is circulating in your blood. Anywhere below 90% is a cause for concern and will generally call for supplemental oxygen. Elsie's sats were in the mid 80s, which isn't horrible, but she definitely needed some help. After a nose swab and an exam, it was determined that Elsie had human Metapneumovirus.

Metapneumovirus generally produces cold-like symptoms, but for young babies or people with lung problems, it can cause more severe problems like bronchiolitis or pneumonia. Luckily for us, Elsie's lungs sounded remarkably clear throughout the illness, which is great, and it never developed into pneumonia. We thought we might be sent home on Sunday afternoon, because Elsie seemed to be doing better and was off the oxygen for several hours. However, the doctors were cautious and worried that the virus would be getting worse before she got better, as is apparently typical with this particular virus. Since it was still pretty early in her illness, they didn't want us to leave just yet. Which was annoying, but it was definitely good that we stayed. Elsie had to be put back on oxygen later that night, was really coughing a lot, and spiked several very high fevers that scared the crap out of me.

Late Monday night and Tuesday morning was when things were at their worst. Elsie's fever was almost to 104 degrees, and I could tell the nurses were concerned. Luckily she responded well to the Tylenol and Motrin, and her fever went down. But that didn't stop me from having a bit of a meltdown. You see, Clayton was home with Evje, who apparently had developed an ear infection and wasn't feeling well herself, and she was missing her mommy. Clayton had to go back to work early Tuesday morning, so we had arranged for Evje to sleep over at our cousin Shannon's house Monday night, and Shannon would watch Evje during the day Tuesday. However, during dinner, Evje broke down sobbing that she missed me and for whatever reason, didn't want to sleep over at Shannon's house. This is not typical behavior for her. Clayton called me on the phone, and I tried to talk to Evje, but she was just crying so much that I couldn't even understand her, and it broke my heart. In the end, she ended up sleeping at Grandpa Joel's house, because according to Evs, "Grandpa Joel is daddy's dad, so that reminds me of my dad, and I won't be so lonely." I felt so torn up, knowing that my girl was sad and missing me, but needing to be with Elsie in the hospital. I cried a lot, and the doctors probably thought that I was losing my marbles. I asked my dad to come on Tuesday morning and give Elsie a priesthood blessing, and he gave me a blessing as well, and then I didn't feel so bad. Thanks, Dad.

We had several lovely visitors; my sister Ramona and niece Riley visited a few times and brought me chapstick and clothes to sleep in. My parents came on Monday morning and brought me some more essentials, as well as a watercolor book for Elsie and a story book. My dear friend Staci came on Tuesday afternoon with a bag of goodies for me and a basket of toys and treats for Elsie. She encouraged me to go take a shower while she played with Elsie, and I did go, and I did shower, because I smelled very badly. After almost 3 whole days of not leaving Elsie's side, it was quite nice to stretch my legs a bit and look out a window with a view besides the parking lot.

On Tuesday afternoon, things were looking better and the doctors finally started discussing sending us home with supplemental oxygen. We finally got the ok to leave, signed the discharge papers, packed our bags. and then, as I was changing Elsie's clothes before we left, I noticed that she was feeling rather warm again. I debated with myself for a few seconds whether or not I should tell the nurse, or just leave, but I decided to be responsible and told the nurse that Elsie was fevered again. It was up to 103 degrees, so they gave her some Tylenol, made us wait for half an hour to make sure that her fever was going down, and then they finally let us leave. We trooped out to the car with all of our stuff and an oxygen tank, and then we zoomed out of there before anything else could happen to make us stay.

Elsie turns THREE!

Happy 3rd birthday to Elsie!

We celebrated with Elsie's favorite meal for dinner, spaghetti. Isn't it awesome that she has favorite foods now? The kid loves pasta.

Next was opening presents, which was super fun. Elsie loves stuffed animals, and kitties, and since we will probably never get a live cat, we bought Elsie a white stuffed animal kitty. She's enamored with it, of course. She also got the movie Bambi, and My Little Ponies, and clothes/books/etc.

Then I had this idea that since Elsie never got to enjoy a smash cake when she turned one, I would make her a smash cake for this birthday! I had all of these visions in my head of her being silly and making a big mess, gobbling up handfuls of cake right and left. We brought the cake out, sang happy birthday, let her blow out the candles, and then told her to dig in.

She asked for a fork.

Haha, what? A fork? It's a smash cake, you eat it with your hands or stick your face in it! Both of my kids looked at me dubiously when I tried to explain. Elsie thought I was kinda nuts, but she (and Evje) put her head down next to the cake and took a small nibble. Then asked for a fork again. I sighed, and gave her a fork, and she did eat.

Well, you can't blame me for trying. At least she's eating cake now! Don't ask me where my prim and proper girly-girls came from; hopefully someday I will have a little boy who won't be afraid to get dirty once in a while.

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!

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.

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.

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.

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.

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!

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.

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.

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?

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!

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!"

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.

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.

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!

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!