Thursday, December 4, 2014

23 Months!

Here's what has been going on this last month:

Not a whole heck of a lot!

We celebrated Thanksgiving (twice) and had so very much to be thankful for this year. We brought our blender along with us, and Elsie got her very own Thanksgiving dinner consisting of turkey, mashed potatoes and gravy, sweet potatoes, stuffing, cranberry sauce, and green beans. At our second Thanksgiving dinner, Elsie's blend was turkey, stuffing, cranberry sauce, spinach salad, mashed potatoes and gravy, and grape juice. Even tubies can enjoy Thanksgiving dinner!

Clayton was out of town for work before Thanksgiving, so it was just me and the girls for ten days on our own. It actually wasn't as bad as I thought it would be (but I did miss him exceedingly and never ever want to be a single parent all the time). The girls were pretty well-behaved for the most part, and we spent some time with friends and family, so I wasn't terribly lonely. But it sure was nice to have him home. Since he has been back, Elsie has been quite the Daddy's girl; she runs to greet him when he comes from work, and prefers to be with him over me. We definitely all missed him while he was gone.

Alrighty. I think that's really about all that has been going on. I told ya, not very much.

And apparently I have taken zero pictures of my kids since Halloween, so I snapped a few quick ones before taking Evje to preschool this morning.

And that's all, folks! See ya next month.

Saturday, November 8, 2014

22 Months!

I know, I'm overdue for Elsie's latest monthly update. Here you go!

We've had a busy month! It started out with a modified barium swallow study.

This was done to make sure that Elsie doesn't have any anatomical abnormalities with her swallow, and to make sure that she doesn't aspirate (which is when food goes into your lungs instead of down to your stomach). She had a swallow study done while she was still in the NICU, but our feeding therapist wanted to have a more recent one to look at. So we did. Same procedure as the first one: Elsie swallowed liquid barium while being x-rayed, and the radiologist and our SLP watched the x-rays to make sure everything was good. And it was good. Mostly. Ok, well, they had me giving her the barium in a cup so that they could watch the x-ray. I got a little nervous, because as you know, Elsie doesn't exactly love swallowing stuff, especially unfamiliar liquids or really anything besides water. So they told me to pour some of the barium into her mouth, I was kinda nervous, and dumped like half the cup in her mouth. Which, understandably surprised poor unsuspecting Elsie, who choked on the sudden influx of unexpected liquid in her mouth, and she aspirated. Oops. BUT she immediately coughed, cleared her airway, and the radiologist could see that it was kind of an accidental choking. Ahh, I'm such a good mom. So while she did technically aspirate, they didn't count that as an aspiration, but saw it as more of how she protected her airway and was able to immediately clear the liquid. And after that, Elsie was understandably angry, didn't want us to give her any more barium, and threw up the little bit that we did get in her stomach. So we watched on the x-ray as she threw up, then swallowed it back down. Then threw it up, and swallowed it back down. Repeat several times. And the conclusion was, Elsie's swallow is normal and she does not aspirate.

The next day, we had an appointment at the Neonatal Follow-Up Clinic. Elsie was tested for cognition, had her hearing and speech evaluated, talked with the nutritionist, and chatted with the Developmental Pediatrician. Long story short: Elsie is doing great. Her cognition is right where it should be for her age. Passed the hearing tests. Her expressive language (speaking) is mildly delayed. The nutritionist was pleased with the blended diet recipes that I brought in, and is going to do an in depth analysis to make sure that Elsie is getting all of the nutrients that she needs, or if there is anything we need to improve or change in her diet. The Developmental Ped was very happy with Elsie's progress in her motor skills. When we were first seen at the NFC one year ago, Elsie couldn't sit up, roll over, crawl, anything. She had mildly low muscle tone.  Now she is walking, learning to talk, gesturing, climbing, going up and down stairs, etc. She's made huge progress in her motor skills. It's nice to have this resource available to us to make sure that Elsie is progressing as she should.

In other unrelated news, it seems that Elsie has a sensitivity to dairy, specifically, to the milk protein casein. When we first started the blended diet back in February/March, we tried whole cow milk and Elsie got really constipated, and the eczema on her arms and legs got worse. So we switched to goat milk, which has been great, it's very easily digested and Elsie had no more problems with constipation or eczema. The only downside to the goat milk is that it's quite expensive. Well, about a month ago, I started adding cow milk to her blends again, to see if she had outgrown her previous sensitivity. Consequently, for the last few weeks, Elsie has had runny stools, more unexplained vomiting than normal, increased irritability, and increased nasal mucous in the mornings with no sign of an illness or teething. So we took out the cow milk and the goat milk, and switched to coconut milk and almond milk. She has been on the dairy-free blends for three days now and already her poop has solidified, and has only thrown up once, when she choked on a frito. This is a pretty definite indication that she was having problems with the dairy. Now we know, and we can easily adjust her food to be dairy-free. I did, however, have to dump out a whole week's worth of Elsie's food that was in our freezer that contained dairy, and that was pretty heartbreaking. But hopefully, now that we have fixed the dairy problem, Elsie can continue to gain weight with less digestive problems.

PS, sorry if you are disturbed by the multiple mentions on this post about poop. Obviously, if you have issues with poop and vomit, this probably isn't the right blog for you to be reading :) Because I talk about it all the time!

In more unrelated news, we had an awesome feeding therapy session this month wherein Elsie fed herself some chocolate pudding!! Here's what happened: So we've been working with Elsie on trying different liquids other than water. She enjoys drinking water. Not so much any other kind of liquid. Water is great, but it doesn't have any calories. On this particular day, we were trying to get Elsie to drink chocolate milk (of course now she'll have to switch to chocolate almond milk, ha ha), and she was doing fairly well. She was playing with a straw, and dipped the straw into the milk, and then we showed her to dip the milky straw into her mouth. We did that a few times, and then Helene grabbed a spoon and did the same thing; dipped the spoon into the chocolate milk and then into Elsie's mouth. For whatever reason, Elsie was surprisingly accepting of this milky spoon going into her mouth, which is something that she usually NEVER allows. She did this a few times. I couldn't believe my eyes. So while we were on a roll, Helene grabbed a chocolate pudding and snuck the spoon into the pudding and then into Elsie's mouth, and Elsie let her put it in!! Honestly, I know this doesn't seem like a big deal, but for Elsie, it was HUGE. We did that a few times and then Helene gave Elsie the spoon. There was much flinging of chocolate pudding all around the room, but there were multiple times where Elsie, completely on her own, dipped the spoon into the pudding and then brought it to her mouth. She only gagged once or twice, and no puking. Of course, the majority of the pudding was spit out after it entered her mouth, but she had to have swallowed some of it. Helene and I were both crying!! I never thought the day would come where Elsie would willingly feed herself, and especially with no throwing up. It.Was.Awesome.

So then of course I post all of Elsie's chocolatey-pudding-covered pictures on Facebook, and now everyone assumes that Elsie is completely eating on her own. Ohhh, how I wish that were the case :) Unfortunately, the chocolate pudding miracle has not been repeated. I don't know why. I don't know what magic it was that helped her to feel confident enough to do it at feeding therapy. We've tried to recreate the situation, but chocolate pudding is back to being the enemy. It's extremely frustrating. We are constantly taking one step forward, and three steps backwards. But I have faith that one day we will be taking giant leaps forward, and only baby steps backwards, and we won't even remember the days when we were struggling so hard.

Despite that lack of chocolate pudding eating, Elsie has made improvements with other foods. She often asks for tastes of foods that the rest of the family is eating, and will take tiny bites and then spit the food out. One time I was eating a granola bar with some peanut butter slathered on top, and Elsie asked for a taste. I offered it to her and she sucked off some peanut butter, and then one taste turned into several tastes! Again, she spit most of it out, but you know how peanut butter is so thick, she had to have processed quite a bit of it in her mouth and swallowed some of it down. I was so excited. She did the same thing a few days later with a piece of pizza; she would suck the sauce off my slice multiple times and actually spit out very little of it.This is huge progress! If only she were more consistent with her progress, then I'd be over the moon! But progress is progress, and I'll take it in any way.

Here's some pictures of the last month:

Tasting some KFC and loving it!

Mommy's chicken picatta with pasta is yummy!

Wonder Woman Elsie and Strawberry Shortcake Evje for Halloween

Trick or treating is hard work!

The amazing chocolate pudding moment.

Making a mess and eating some, too!

Monday, October 6, 2014

21 months!

Wow! The days are flying by. Little Miss Elsie is 21 months old!

Let's see, what has been happening lately?

Elsie went to nursery for the first time! I have been somewhat apprehensive about leaving her in nursery. It wasn't so much that I was worried about how she would do there; it was more of I was worried that she would choke on something and puke all over all the kids & toys and they would ask us not to come back. I also have some concerns about all of the germy kids during winter, but I'll deal with that later. But anyway, she did great! No crying, no puking, I kinda wish we would have taken her there sooner. So there you go, Elsie's in nursery.

Our three months of "physical therapy" at Baby Gym ended a few weeks ago, and then we had our one-year evaluation with DDI (Early Intervention) who we get our physical therapy services through. We did some tests and evaluations, and it turns out, Elsie no longer needs any DDI services! She probably hasn't for a while, but they only do evaluations every six months, and besides, going to Baby Gym was pretty fun. She is testing at 21 months or higher for all of the sections of the test (Gross Motor, Fine Motor, Receptive Language, Expressed Language, Cognition) except for Self-Help, which most of the questions for that section deal with self-feeding, so yeah, that one was only at 18 months. But that's still no big deal. No more physical therapy! Elsie is caught up to where she should be. Who would have ever imagined that we would get to this point?

This week is a busy week for Elsie; she has a swallow study on Wednesday and an appointment with the Neonatal Follow-up Clinic on Thursday. The swallow study is just to make sure that Elsie doesn't have any mechanical or anatomical problems with her swallow, since she hasn't had a swallow study since she was in the NICU. And as always, I'm excited to go to the Neonatal Follow-up Clinic, I love seeing how she is doing in so many areas at one time. And I'm particularly excited this time to talk to the dietician some more about Blended Diet.

Elsie is getting more and more independent, enjoys playing outside and having books read to her, loves horses and dogs, and is good at torturing her older sister. Sometimes they get along well and it's really cute, and then there's the other times when they fight like cats and dogs.

We went back to the NBICU at the University of Utah and got to visit with a few of Elsie's nurses! It was really weird to be there. So many memories, so much time that we spent there. It's sort of surreal that Elsie has been home from the hospital for well over a year. She is doing so well now, and we are ever thankful to have this special child in our family. She has been a blessing in so many ways, despite the challenges with eating. I don't know if it's possible to communicate to the many nurses, neonatologists, nurse practitioners, respiratory therapists, and so many more who helped Elsie when she was a tiny baby, just how grateful we are.

Anyway, I shouldn't write these blog posts while simultaneously watching silly shows on Netflix. It ruins my concentration. Happy 21 months, Elsie!

Monday, September 22, 2014

Evje's birth story

I have never written down Evje's birth story. I probably should before I forget. Here's what happened. (warning, warning, this is going to be quite long!)

My pregnancy with Evje was uneventful and really one of the best times of my life. Honestly, I loved being pregnant. It took us 3 years to conceive Evje, so when I finally got pregnant, I was thrilled to the core. My main pregnancy symptom was being incredibly hungry at all times. I could eat a full meal and then be starving again in an hour. If I didn't eat, it made me feel sick, and then nothing looked good to eat because I felt sick, but I was so hungry that I absolutely had to eat. If you know me well, you know that even when I'm not pregnant, I get a little "testy" when I'm really hungry. When I'm pregnant and hungry, better watch out. I didn't really have any cravings, but when I was super hungry, a nice milkshake usually hit the spot. Other than my extreme hunger, I didn't have any other pregnancy symptoms; very little nausea, only threw up twice. Pregnancy was fun.

Evje's due date was May 4. On the morning of Saturday, April 30, I started having painless contractions. They didn't hurt at all, but I could feel my uterus contracting. It was pretty exciting, knowing that our long-awaited baby was finally on her way. We went about our day; among other things, we drove out to Rush Valley to check on the cows. I remember walking through the field, my imagination going a little crazy as I thought about what would happen if I had to deliver my baby in the cow field. Would the paramedics get there in time, or would Clayton have to deliver her, with our dogs watching? I know he's delivered plenty of calves, and Joel and Clayton teased me throughout calving season that they would pull out the calving chains and calf puller when I went into labor...hilarious, I know...but delivering a human baby is slightly different than delivering a calf. I figured that he and I together could probably get the job done.

We realized that the baby would probably be coming within the next day or two, but it was our first baby and we weren't entirely sure what to expect, and first babies typically take a long time to arrive. My contractions were still quite painless as the day went on, but I could definitely feel them. We watched a movie together that night, our last night as a two-member family. When we went to bed around 11:30pm, things were finally starting to get a bit painful. I tried to sleep, but was much too excited, and spent the next few hours timing contractions. Around 2:30am, painful contractions were coming every 3-4 minutes, so I woke up Clayton and told him that it was time to go! Before we left, I asked Clayton to give me a priesthood blessing, that I might have some comfort and reassurance during this nerve-wracking time.

We got checked into the Women's Center of the hospital, and got all hooked up to the monitors. I was dilated to 4cm and was having painful contractions every few minutes. My water still hadn't broken, so the nurses advised us to try to get some rest while my labor progressed. Easier said than done, but we tried to rest.

Having never had a baby before, I didn't know what labor would feel like, or what levels of pain I would be able to tolerate. I told the nurse that I wanted to labor on my own as long as I could before considering an epidural. I know that every woman experiences different things during labor, and some can handle pain better than others. For me, as the night went on, contractions got more and more painful, and I decided to stop being so silly and just get the dang epidural.

I think the anesthesiologist came in around 6am. I got the epidural, but told the anesthesiologist that I still wanted to be able to feel enough to push, so I asked for only a small dose of pain medication. An hour or two went by, and contractions were still quite painful. Having never had an epidural before, I didn't know what it was supposed to feel like, even with just a small dose of medication. When the doctor came in to break my water and realized that I could still feel what she was doing (ouch), she called the anesthesiologist back to our room. When he arrived, it was determined that only the right half of my body was numb. The left half was still painfully feeling everything. So, lucky me, I got to have a second epidural administered. Torture, let me tell you.

When the doctor broke my water, it was determined that there was meconium (fetus poop) in the fluids, and there was some worries that the baby would inhale some of the meconium and get an infection.

Still progressing through labor. It was pain-free for about an hour or two, but right before I started to push, the medication was beginning to wear off on my left side again. Good times. So I got to push being only halfway numb. It hurt. I pushed for an hour and a half with very little progress. I was exhausted. Pushing out a baby is hard work! Our doctor came in to evaluate my progress, which was not much, and determined that, with the risk of the baby having swallowed some of the meconium, things were taking too long and she would like to do a c-section to get baby out sooner. She told me that it was possible that my pelvic bones were too narrow to allow the baby through. I was crushed, and very scared to have surgery, but having been in labor already for 12 hours and pushing for an hour and half, I just wanted to get to get the baby out. We agreed to the c-section.

When we got to the operating room, the anesthesiologist gave me enough medication to knock out a horse. He wanted to be sure that I wouldn't feel any of the surgery, especially since we had trouble with the epidural before. Well, I guess the third time's the charm, because I was completely numb from the neck down. It was a really really weird feeling. When they lifted me onto the operating table, it seriously felt so strange, almost like I was falling. Anyway, the doctors did their thing, cut me open, and took the baby out. They held her up long enough for me to see her, and then the nurses took her to be cleaned, and to check her breathing. Fortunately, our sweet baby was fine. The nurses all commented on how strong she was, how lovely, and how loud her cry was. It was heaven to hear my baby cry for the first time. Evje Robin Sagers was born at 2:30pm on Sunday, May 1. She weighed 7lbs 6oz, and was 21 inches long. She was beautiful.

Most birth stories end after the baby is born, but mine keeps going! Ha ha. Later that evening, we're back in our recovery room, snuggling with baby and visiting with Clayton's parents. Suddenly, I don't feel very good and vomit into the garbage can. My head hurts pretty bad, and now my stitches hurt from the force of throwing up. It's not fun. Whenever I sit up, the pain in my head intensifies, but the pain diminishes when I lay down. I know that sounds really lame, "Oh I had such a painful headache, blah blah blah." But seriously, it was more painful than going through labor. Luckily, I had a good nurse who recognized the signs of what's called a spinal headache. Basically, sometime during one of my two epidurals that day, the epidural needle punctured a hole in the membrane that surrounds the spinal cord. Spinal fluid was now leaking out of my spinal cord, and the decrease in pressure was causing the immense headache. The nurse started an IV with caffeine, which can sometimes alleviate the headache, and called the anesthesiologist again.

The caffeine didn't help, so when the anesthesiologist came back, he administered what's called a blood patch. That's a super fun procedure where a small amount of blood is injected into the space over the puncture hole, in the hopes that a clot will form and seal the hole. So, yep, I get a third needle injected into my spine in less than 14 hours. It was awesome. I am then given very strict instructions to lay flat on my back for the rest of the night, in order to let the blood patch work. I am given lots and lots of pain medications, and besides the brief moment that the night nurse comes in to check  my vitals, it is the best night's sleep that I've had in a long, long time.

The next day, I feel so much better! I have lots of visitors, practice breastfeeding, and spend lots of time snuggling with my beautiful baby girl. The nurses are all so sweet and attentive, and it's just lovely having everything and anything brought to me with the push of a button.

Sometime either Monday night or Tuesday morning, I don't remember exactly when, my head started hurting again. It was deja-vu. This time, I knew what was happening, and we got that dang anesthesiologist back in to give me a second blood patch. That's the fourth needle that was injected into my spine. I spend most of the day Tuesday laying down, resting, and praying that the blood patch will work this time.

Wednesday morning, I felt great again! Today was our check-out day, and I prepared to take my baby girl home. I changed her clothes into our going home outfit (green and yellow, because I was a tiny bit paranoid when I packed that maybe the ultrasound tech had been wrong about the baby being a girl, and it would be sad if our baby boy had to go home in pink clothes), and then I glared at a technician who said what a cute little boy I had. Clayton had recently started a new job, and couldn't get work off to take us home, so his father came to the hospital that afternoon to pick us up.

We got home, it was great, we had a few visitors and some friends came who brought us dinner. My sister-in-law Sarah volunteered to come stay with us for a few days to help out. Well, I woke up Thursday morning after a restless night of getting up at every little whimper and squeak that Evje made, and the dreaded spinal headache was back. Nooooo! I spent all day Thursday in bed, determined that if I held still long enough, then the headache would go away. Unfortunately, it doesn't work like that, and I still had the headache on Friday morning when I woke up, Unable to handle the pain any more, I had Sarah take me to the emergency room. I had to recline the car chair back as far as it would go during the drive, as I physically could not handle to pain of being upright. I hobbled into the ER, told them I had a spinal headache, and demanded a bed to lie down. Lucky for me, the ER was not very busy at this time, and there was a bed immediately available for me, which is good because if not, I would have just laid down on the floor. We waited around for a while for a doctor, Sarah changed Evje's diaper on a bed in the next room and Evje peed all over the bed, and I got a third blood patch. That's the fifth needle in my spine. Again, I was given very strict instructions to lay flat for the rest of the day and night.

Fortunately, luckily, thank heavens, the third blood patch worked and fixed the hole, stopping the leak of spinal fluid. It was the most miserable and painful five days of my life, and I hope to never have to go through a spinal headache again! Besides the misery of the headaches and five needles in my spine, we were blessed with a beautiful baby and our lives were forever changed. We were so grateful to finally have a child of our own.

Friday, September 12, 2014

Tubie love

The other day, I found myself at Target with a shirtless Elsie, looking for a new shirt for her to wear for the remainder of the day. We were in Salt Lake City for feeding therapy and visiting with family, so I couldn't run home and get a clean shirt. Elsie had thrown up on our way to feeding therapy, because she was angry and crying that her big sister wasn't sharing her toys with Elsie. Then at feeding therapy, while wearing the back-up clean clothes that I brought in the diaper bag, she spit out nearly all of the chocolate milk that we gave her and soaked her clean shirt. Lesson learned: carry more than one back-up outfit in the diaper bag at all times, and bring a bib for feeding therapy.

Anyway, I was at Target with my shirtless child, and I found myself holding her in a way that kept her feeding tube (button) hidden from view. I didn't want anyone to stare at her. Suddenly I thought to myself, "Why am I hiding her button? It's nothing to be ashamed of. It's nothing embarrassing. It's how she eats." So I set my shirtless child on the floor and let her walk around, button uncovered and exposed to whoever may see her. Sure, some people did a double take. I'm sure there was more than one person who wondered what her button was. But no one pointed at her, no one stared cruelly or laughed or drew any attention to it in any way. 

It made me realize that I've never posted a picture of Elsie with her button uncovered. We generally try to keep a shirt on her just so that the button doesn't get snagged on something and get pulled out, and so have taken very few pictures of her with her button showing. If anyone ever asks about it, I'm happy to explain what her button is and why she has it, but I've been somewhat hesitant to post pictures. Why? I'm not sure. Like I said, it's nothing to be ashamed of. It is simply how she eats. So I've decided that I myself need to not be embarrassed or ashamed of it, and am going to proudly post pictures of my little tubie with her button. It's (literally) a part of her. Someday, there will come a day when we look back at this time, and remember when Elsie had a feeding tube, and will need pictures to document what it was like. Because she won't always have it. She will overcome her oral aversion. 

This is my sweet tubie, proudly showing off her button. It's a part of who she is.

Sunday, September 7, 2014

20 months!

It occurred to me today that I have told three people in the last few days that Elsie was almost 20 months old, when in fact she was 20 months old last week. Oops, ha ha.

There's not a lot of new things to report! No new teeth, no amazing new skills. We're just continuing on day by day in our little journey through life. Elsie is growing up and changing from a baby to a toddler.

We went on a quick family road trip to Logan and Bear Lake over the Labor Day weekend. The girls thought the water in the lake was a bit too cold, so they didn't enjoy it as much as I had imagined that they would, and Elsie didn't love playing in the sand on the beach, either. Oh well. It was still fun. During this trip, I re-discovered my inner genius when I kept an empty Pringles can next to Elsie's car seat because I knew it would come in handy if/when she threw up in the car. And she eventually did throw up, and I caught it all in the Pringles can. Victory!

I'm getting braver and braver each time I do a tube-feeding in a public place. I used to be hyper-aware of people staring at us when I fed Elsie, and would get really nervous and self-conscious. But now it's no big deal. I'm still aware of people staring, but it doesn't bother me as much. On our trip to Bear Lake, I fed Elsie in a Golden Corral restaurant and at an outdoor drive-in type restaurant where you eat outside at picnic tables and watch as everyone goes by. Sure, people might watch us and wonder what is going on, but that's ok. I'm just feeding my kid, same as everyone else. Her food is just delivered by a different route.

Monday, August 25, 2014

Blended Diet recipes

This is just a little update on the types of things we feed Elsie through her gtube. I feel like I've settled into the BD groove since starting out in February, and feel pretty comfortable and confident with the foods she gets. I've definitely learned a lot, through trial and error, and things have been going really well lately.

Since we discontinued her night time feeds, Elsie is able to tolerate a much higher volume of food than she used to. We also learned that if we give her breaks between ounces, then this also helps her tolerate more food. For example, at each meal, we feed her four ounces, give her a ten minute break, feed two more ounces, give another ten minute break, and then feed the last two ounces. She currently gets a total of eight ounces for each meal, which is huge compared to the five ounces that she used to get a few months ago. We have very little unexplained vomit now, which we used to have lots of problems with. Now, Elsie throws up for very specific reasons: she has gagged/choked on something, or she is crying too hard, or even sometimes when she laughs too hard. That's about it. It's really nice to know the reasons for her vomiting, instead of the "I have no idea why she puked", which used to happen so often and was so frustrating.

Anyway, I wanted to post some of the recipes that I use to feed Elsie. I try to go off of the guidelines on the "Choose my Plate" website as far as keeping her diet balanced. Of course, nobody's diet is perfect everyday, whether you are orally fed or tube fed, but we all try our best.

For Elsie's breakfasts, I made a "porridge" in my crock pot. I put in 1/2 cup ten grain cereal mix, 1/2 cup quinoa, 4 cups water, and 1 cup canned coconut milk. It cooks on low for 5-6 hours or until everything is soft and mushy and well-cooked. The coconut milk adds lots of great calories. I usually add some cinnamon, nutmeg, ginger, and ground cloves, just to make it smell nice, and because I can. Once it is cooked and cooled down, I blend the porridge in my Blendtec until it is smooth, and then freeze it in individual portions. Each morning, I mix together 4 oz of breakfast porridge with 2 oz mixed blended fruit, 2 oz milk, a liquid multi-vitamin, and a tablespoon of olive oil for essential fat and extra calories. Sometimes I'll add some yogurt. Some of the fruits I have used in her mixed fruits include but are not limited to: apricots, peaches, pears, apples, pineapple, kiwi, avocado, blueberries, strawberries, blackberries, raspberries, watermelon, cantaloupe, and mango. Pretty typical breakfast of cereal, fruit, and milk, huh?

For lunches and dinners, I make a "whole blend", which to me, means that it's a mixture of many foods which, when blended together make a nutritionally complete diet. It's kind of gross to some people when they see the things we have blended together, and I wouldn't recommend eating her food orally because they are unlikely food combinations, but it works for tubefeeding. For example, this is the "whole blend" that I made today:

1 cup milk
1 cup whole fat Greek yogurt
1/2 cup rolled oats
1 cup Honey Bunches of Oats with Almonds cereal
1 cup peaches canned in heavy syrup
1 cup spinach
1/2 cup frozen peas
1/2 cup summer squash, sauteed in butter, salt, and herbs
2.5 oz cooked ground beef
1 oz walnuts

So yeah, it smells kinda funky and looks ... unappetizing, but like I said, it works for tubefeeding. And it includes all of the recommended amounts on the government's website.

I generally use the same basic recipe for Elsie's whole blends, but rotate the foods that I use so that she gets a variety of foods in her diet. So a whole blend that I made a few days ago contains the same amount of milk and yogurt, but chicken instead of beef, and brown rice and multigrain bread instead of oats and cereal. The fruits and vegetables are also rotated. We've been using lots of squash and zucchini and apricots lately, as that is what has been bountiful in our family's gardens this summer, but also enjoy using sweet potatoes, carrots, green beans, swiss chard, bell peppers, collard greens (stinky but very nutritious), and frozen vegetable mixes, just to name a few. I add a few ounces of seeds or nuts to each blend to add nutritious fats and calories, such as sunflower seeds, pumpkin seeds, almonds, walnuts, cashews, and peanuts.

When we have a surplus of veggies or fruits that somebody has so kindly given to us, I freeze or preserve it to save for later. I have cooked and mashed up extra veggies, and then I freeze it in ice cube trays or in small size plastic containers. I froze apricot halves as well as pureed apricots in ice cube trays, and also preserved apricot puree in bottles. I'm definitely loving this summer's harvests and looking forward to more harvesting throughout the fall; I can't wait to get my hands on some fresh peaches and pears to freeze and preserve, as well as the apples growing on my trees outside. If anyone has an abundance of produce that they are wanting to share, we'd love to have some!

Before I go to bed each night, I give Elsie 4 ounces of fortified breast milk. I stopped pumping breast milk about a month ago, but have enough saved in my deep freeze to be able to feed it to her for several more months. We have also found that, while Elsie is not lactose intolerant, she does a lot better with goat milk than cow milk. Cow's milk made her constipated and seemed to aggravate her eczema. Goat milk is the closest in composition  to human breast milk, and is so much easier for little tummies to digest. It's also the most comparable to whole cow's milk in terms of fat and calories; cow milk alternatives like almond milk or soy milk generally have very low calories and are low-fat. I'm not anti-cow milk by any means, but Elsie has been doing great on goat's milk, so we will continue to use it as the base liquid for her blends.

Anyway, thanks for listening to my food rambles. I so enjoy making wholesome food to feed Elsie and thinking of new ingredients to add to her blends. It helps me to feel more like a typical mom who cooks for her family, which might seem kinda silly to you, but as the mother of a tube-fed child, anything that makes us feel more "normal" is a good thing.

Monday, August 18, 2014

Sensory play

As you know, Elsie has an issue with food. She doesn't like it, trust it, or enjoy it, for the most part. She especially doesn't care for foods that are wet or squishy, etc. Lots of times when I offer her food, she will give it the "squish test": she grabs the food item and squishes it between her fingers. If it crumbles or squishes or otherwise breaks up, she generally won't eat it. This applies to things like soft fruits, pudding, jello, or other wet foods. It's a sensory thing; she doesn't like the feel of wet and squishy things. And if she doesn't like the feel of it in her fingers, you can guarantee she's not going to put it in her mouth.

In an attempt to help her overcome her dislike of wet foods, we often engage Elsie in sensory food play with wet foods; where the emphasis is not for her to eat the food, but to play with it and be comfortable touching it. Here's what we did the other day:

I took some applesauce and used food coloring to make it several different colors. Then I took Elsie and Evje, took off their clothes, and plopped them in the bath tub with the applesauce, some spoons, forks, measuring cups, and bowls.

Evje thought it was awesome, and dug right in. Elsie was a bit more hesitant. I was hoping that watching Evje play with the applesauce would encourage Elsie to be more interested in playing. We put different colors of applesauce together in bowls, did some finger painting on the walls of the tub, and did some body painting. Evs seriously thought this was the funnest thing ever. Elsie...not so much. After the first few minutes, she cried a lot and wanted nothing to do with the evil applesauce, much less have her sister smear it all over her leg. So I'll be honest, it was a bit of a fail as far as getting Elsie comfortable or willing to touch the wet applesauce, but it was worth a try. Her food aversions aren't going to be changed overnight, so we'll just keep trying. And it kept Evje entertained for a good 20 minutes. Messes are good to make, sometimes.

Thursday, August 7, 2014

19 months!

Well hi there! Whatdya know, Elsie is 19 months old! Here's what has been going on:

  • She's totally walking!!!! Remember how I've been saying for months and months and months that she was so so so close to walking and would start any minute? Well, she finally did. Seriously, it was thrilling to watch her learn. So proud of my baby!
  • Got her fourth tooth! Two on top, two on bottom. Cute little jack-o-lantern smile!
  • Went on her first family road trip. We drove from Utah to Colorado Springs for a family reunion, and Elsie was fantastic. She only threw up in the car once, when she was crying that Evje and I got out of the car for a (false alarm) potty break and Elsie had to stay in the car with Daddy. She spent a lot of time sleeping, which is always awesome, or playing with toys, or teasing her sister. We loved being able to introduce her to our extended family, most of whom have never seen Elsie before. One of our cousins just got a feeding tube, so it was great to not be the only tubie family, and to be able to talk "tubie" with someone who gets it.
  • Speaking of the road trip, you might be wondering how we fed Elsie whilst traveling. Instead of trying to keep Elsie's food frozen for five days in a cooler, or dealing with thawing her frozen food while trying to feed on the road, or even bringing our Blendtec blender with us, ha ha, we decided to go with simple. There is a company created by the mom of a tubie called Real Food Blends. It is commercially packaged, blended real food in shelf-stable pouches. We ordered a case of the Real Food Blends and had it shipped to the hotel where we were staying, so the food was already there when we arrived. For any tubie families looking for something easy to feed while traveling, or to have on hand in case of emergencies or power outages or the zombie apocalypse, I would highly recommend Real Food Blends. It was so simple. We were out and about on various activities for the reunion, so I threw a pouch or two into the diaper bag with a syringe, and we were good to go. No cooler, no ice packs, no microwave needed to warm the food up to make it smooth. It was ready to feed right out of the package. And the ingredients are incredible. So far, there are three varieties of blends that you can purchase, and each pouch has only five or six ingredients. Nothing processed or artificially added. Just food. Anyway, this isn't a paid endorsement, but I totally want to buy a bunch of the Real Food Blends to have on hand as Elsie's food storage. What a great Christmas present that would be for someone to get for us, hint hint!
  • Since she started walking, Elsie has gained so much more confidence and is more comfortable around strangers. It's sooo nice to not have to sneak out of a room and hope that she doesn't notice me leaving, which would make her cry, which would make her vomit. She's much more adventurous and even walks up to total strangers. Who would have thought?
  • Elsie's physical therapy has taken a very fun turn this month. Since she is in the Early Intervention program, we were able to get into a mom & tot class at a local gymnastics center for free, and that is our "physical therapy". Once a week, we go to the "Baby Gym" class, where we do various obstacle courses and different activities that involve climbing, walking on a balance beam, jumping, hanging from a bar, crawling through tunnels, and so much more. All are great activities to help Elsie improve her balance and motor skills.
  • I don't know if I mentioned this on the blog or not, but a few months ago, we discontinued Elsie's continuous nighttime feedings. Nighttime feedings, while necessary for lots of tubies to get essential calories, and not a bad thing, are not ideal. For one, it's just not natural to be fed all night long. Your gut needs to rest, and some tubies have a hard time tolerating night feeds for this reason. Second, it's a pain in the neck. It wasn't too bad when Elsie was a small baby because she didn't move around much while sleeping, but older babies and children move a LOT while sleeping, which leads to tubes being disconnected from feeding sets, or tubes being pulled all the way out of the stomach, or cords from the feeding set getting wrapped around your child's neck while sleeping. There's also the hassle of the feeding pump's alarm going off in the middle of the night because of a kink or a clog. Or when you forget to plug in the battery pack to charge the battery, and the dead battery alarm lets off its horribly loud shriek in the middle of the night. Or when your kid has a cold and spends the whole night puking because their stomach is never empty. Or when the tube gets pulled away from the feeding set and you end up "feeding the bed" all night long and have a soggy mattress. Not good. Anyway, our feeding therapist recommended that we try weaning off of night feeds in an attempt to see if that would wake up Elsie's appetite and get her to eat orally. So we started a slow wean, but after a few weeks, I had a horrible night of the pump not working right and then feeding the bed when I finally fixed the pump's problem, which led me to say "To heck with you!" and threw the feeding pump into the closet. And we haven't used it since! It hasn't really made a huge difference in Elsie's oral eating, but she is able to tolerate a much larger amount in her tube feedings since she isn't so full from being fed all night, so we are able to give her enough calories throughout the day. Hooray for no more night feeds!!
  • We had Elsie's 18 month check up this morning (a month late, yes, but better late than never) with our pediatrician. He is very pleased with Elsie's growth and development, and says that she's really not very far behind from where her same age peers are. She is small for her age, but so is Evje, so that's nothing new. Her weight is following its own curve, which is good, and is just slightly under the curve for her actual age. Her height made a huge jump in the last few months, and is just about the 10th percentile for her actual age. So proud of my little munchkin!
  • I'm sure there's more I wanted to share, but we had a sleepless night last night due to some unfortunate circumstance involving Evje and a stomach bug, and I'm feeling a bit sleepy. Both girls are currently napping, so I'm going to sign off the computer and, in Evje's words, "take a little rest." And I apologize, I don't have a single new picture to show off! I better get busy and take some pictures, if I can ever get Elsie to hold still. Happy 19 months, sweet little Elsie!

Thursday, July 17, 2014

Beating the odds

Sometimes it thrills me to the core to see Elsie thriving and growing. I'm sure there are people out there who grow weary of me constantly bragging on her accomplishments, but it never ceases to amaze me what she can do.

I just read an article about a baby in Great Britain who was born at 23 weeks and is now 3 years old. He is deaf, cannot walk or talk, is oxygen dependent, has chronic lung disease, cerebral palsy, global developmental delays, and diabetes insipidus. The mother says that she feels guilty each time she looks at him; that she wishes she had not chosen to let him live when he was born. Instead of the suffering that he (supposedly) goes through every day, she wishes that the doctors had simply placed him in her arms when he was born and let him pass away peacefully.


Another article, which made me cry several times, said this:

"Some babies are born so early they are beyond rescue. If a baby is born at or before the 22nd week, it is usually considered a miscarriage or a stillbirth. Almost no doctor will intervene, because there is nothing he or she can do. Other babies ripen in the womb into the third trimester but arrive a little early. If a baby is born later than about 25 weeks, studies show that almost all doctors feel morally and legally obligated to try to save its life. Some preemies have serious medical problems, but most spend a few days or weeks in the hospital learning to breathe and eat and then they go home.
In between those scenarios is a zone between life and death, between viability and futility. If a baby is born after the 22nd week of pregnancy but before the 25th, not even the smartest doctors in the world can say what will happen to it. New technologies can sometimes keep these micropreemies alive, but many end up disabled, some catastrophically so. Whether to provide care to these infants is one of the fundamental controversies in neonatology. Babies born at the edge of viability force us to debate the most difficult questions in medicine and in life. Who deserves to live, and at what cost? Who decides whether a life is worth saving, or worth living? When does a fetus become a human being, with its own rights? When does life begin? About one in 750 babies arrives in that awful window of time, suspended between what is medically possible and what is morally right."
You should read the article. If you want to, that is. It was like I was reading my own story, in some ways. Click here to read it.
Anyway, the point of this already long blog post which I haven't even really started writing yet, is that Elsie is beating the odds. Fortunately, our doctors never gave us a choice of "should we save her or should we mercifully let her pass on". We were just told that they would do their best to save her, but that there was a 75 percent chance that she would not survive, and if she did survive, that she would be severely disabled in some way. How blessed we are to live in an area with a superb newborn intensive care unit, with excellent doctors and nurses who literally saved my baby's life.

When the doctor told us a few days after her birth that Elsie had severe bleeding in her brain , I was crushed. No parent wants their child to have disabilities. We were heartbroken and sad, but we already loved this small child so much, that ultimately, it didn't matter what shape her brain was in. We loved her enough to deal with the challenges that her premature birth would bring. 
As you know, somehow, miraculously, Elsie's bleeding stopped and her brain was unaffected. Her undeveloped lungs were scarred and required supplemental oxygen, which she was able to wean off of just months after leaving the NICU. Her eyes were damaged by Retinopathy of Prematurity, requiring two laser surgeries to prevent blindness, and she had to have corrective glasses for 6 or 7 months. Once again, she was miraculously healed. Her eyes are currently in nearly perfect condition. She has a gtube, yes, and we struggle with oral feeding and sensory vomiting every single day. But again, that is a battle that she will one day win. Elsie is small for her age, but so is her sister. She is behind developmentally in a few minor ways, but not enough to cause concern. She is learning how to walk. She can clap her hands and says "mama". She knows how to communicate to me to sing her favorite song. She smiles, flirts with her eyes, and laughs. Elsie is an absolute joy to be around, and if weren't for the puking, she'd be one of the easiest babies to care for, ever!

My life would be so different now if we had decided not to help Elsie fight for her life in those early days. If we had decided that life might be too hard for her to struggle through, that the odds were stacked against her, and that she might not have a good quality of life. She might have been severely disabled. But then again, she might not.

Even if she had been given disabilities, that doesn't mean that her quality of life would be terrible. I am blessed to know a few families with a special needs child, and have heard the parents say how their child has blessed their lives in unimaginable ways. It's hard, yes. It's not you would want for them to go through. But that doesn't mean that their lives are not worth living.

So as I watch my precious child learning how to walk, struggling to keep her balance, falling down frequently but always getting up to try again ... I can't help but marvel at how much she has been through and how far she has come. I don't know why Elsie doesn't have any disabilities, and why others do. It's a question that I sometimes struggle with, but it's nothing that I can ever understand or explain in this lifetime. That's not my job to explain, but the Lord's. And of course, there is still a high chance that Elsie could develop a condition later in her life due to her prematurity, such as a learning disability or ADHD, to name a few. But for now, I will simply be grateful for Elsie and her abilities and talents. For a baby that had a 75 percent chance of not surviving, she is doing great. For a baby that some doctors might have considered not viable, she is a living miracle.

She is succeeding. She is winning. Elsie is beating the odds.

Friday, July 4, 2014

18 months!

Today Elsie is 18 months old! My little Thumbelina is growing up so fast!

This is what has been going on in the last month:

  • We celebrated Elsie's One Year Home from the Hospital Anniversary! So exciting. I clearly remember the day she came home. Signing paperwork at the hospital, packing up all of her belongings, the signs and balloons that greeted us when we got home. Setting up a baby station of sorts in the living room, since that was where her huge oxygen concentrator machine was located, and trying not to trip over all of her tubes and cords. Feeling so happy to have my family together at last. It has been quite the year, baby!
  • Elsie took her first steps!!! She took two or three steps toward Clayton and we were so excited. Then she didn't do it again for a few weeks, the little stinker. But during this last week, she has been taking a few steps unassisted here and there, and is standing alone for longer and longer periods of time. We are confident that, although we have been saying it for several months now, we will definitely and for sure have a walking baby in our home very soon. Way to go, Els!
  • Elsie's vocabulary has picked up a few new words. She's still saying mama or mommy, and Clayton swears that he had her saying daddy, but I've never heard her say it, despite numerous attempts to get her to say it. Her most frequent word and most easily understood word is uh oh. She can also say baby, ball (balloon), "lolo" for hello, and can sort of say bye bye. Most exciting of all, Elsie can totally say Evje's name. It's so adorable (For those of you who are new here or don't remember, Evje's name is Norwegian; the "j" sounds like a "y", so her name is pronounced "ehv-ya" or "eh-vee-ya"). Elsie's pronunciation, which is really surprisingly good, sounds like "eh-bee-ya". Seriously, it's the cutest thing ever. I love the bond that my sweet girls share as sisters. Sisters are so amazing.
  • Elsie's making slow but steady progress drinking liquids. She prefers to drink water, but has also tried milk, apple juice, and Sprite, among other things. She still spits out a lot of the liquid that goes in, but is swallowing more and more. She kinda stopped liking her honey bear straw cup, but will drink out of a sippy cup, water bottle, or an open cup. It's pretty exciting. She still is not swallowing any foods but we're working on it. 
  • Last month, I talked about Elsie's stranger anxiety issues, which I'm happy to say have been getting better. We've been fortunate during the last week or two to be able to spend lots of time with various extended family members, and she is much more comfortable with everyone. She still prefers to be with me or Clayton, I mean, we're like her coolest parents ever so she thinks we are completely awesome, but is doing much better with other people playing with her or even holding her. Hooray.
  • Got her third tooth! This one came out on the top. Three cute little toothies! 
  • I'm pretty sure that she's getting a cold right now, so I'm really dreading the next week or two of Vomit-ville that I'm predicting will be upon us, but we'll see. Hopefully it will be very mild and won't last for long.
Elsie has made lots of exciting progress during the last month. Her personality is coming out more and more. She is such a fun little girl and we love having her in our family. We are so blessed!

Wednesday, June 4, 2014

17 months!

Elsie is 17 months old today! 13 months adjusted!

Here's what's been going on in the last few weeks:

  • Tooth #2 made its appearance next to Tooth #1. I just love seeing her toothy little grin!
  • New words! Elsie can say "mama!". She also imitates me when I say "walk walk walk!"; it sounds kinda sounds like "gok gok gok" but I know what she's saying and that's exciting to me. Same thing when I say "tickle tickle"; her version sounds kinda like "kick kickle".We've been working on saying "Uh oh!" when she drops something, and she's said it a few times, but usually what happens is she'll drop something and then turn to me with her mouth in a cute little "Oh" shape and it's really just funny and adorable. She cracks me up. She can also shake her head "no" when she doesn't want something.
  • Still cruising around like crazy. I know I've been saying this for the last few months, but she really is sooo close to walking on her own. She has stood up without holding onto anything for several seconds three times in the last 24 hours, which I've never seen her do before. We've been working with our physical therapist to help improve her balance by holding her hands and walking with her on uneven surfaces like grass or wood chips, and her legs are getting stronger and stronger. So, the first steps are coming. Or maybe she'll just be a cruiser for the rest of her life, who knows :)
  • Stair climbing! I actually think Elsie has been able to do this for a few months now, but we try to keep her away from the stairs for safety reasons and haven't given her many opportunities to try going up the stairs. But she totally can climb up stairs. We're still working on how to go safely down the stairs, but that will come with time.
  • Drinking from a straw! This one is pretty huge. We have been working in feeding therapy lately on drinking, either from an open cup or a cup with a straw. She has done pretty good at accepting the cup or straw in her mouth. We have been using a honey bear straw cup, which looks like this: 
        Basically, it's an empty honey bear container with a straw coming out the lid. When you squeeze the bear, the liquid goes up the straw. So if you have a kiddo who doesn't know how to suck or how to drink, the parent can control the flow of the liquid by squeezing the bear. We started out by gently squeezing water or milk into Elsie's mouth. She was kinda surprised at first, but now she thinks it's pretty fun. And just this week, she started sucking water up the straw all by herself!! She spits most of the liquid out as soon as it goes in, but she swallows small amounts. We also let her drink from an open cup, but that usually just ends up with one or both of us getting soaked, which is ok, because that's how you learn. 

And taking sips of liquid all by herself ... well, I hope you can understand what a big deal that is. She hasn't voluntarily drunk (drank? drinken? drunken?) any liquid since she was in the NICU, about a year ago. Even more exciting is that, generally speaking, most tubie kids who are learning how to eat orally have a hard time with liquids, especially water. If you think about it, water is pretty hard to control in your mouth because it is so thin. Thick liquids like a milkshake are a lot easier to handle because it is thicker and slower to move in your mouth. If you don't have very good oral motor skills, thin liquids can be scary because they are hard to control, which can lead to choking and aspirating. I've heard of lots of tubies who are now eating orally, but need to keep their feeding tube for liquids, because the child won't drink enough to stay hydrated. So ... for Elsie to be taking small sips of water all by herself, even though she's spitting most of it out, it's huge. Monumental. Amazing!!

Elsie has issues with strangers, which to her, means anyone outside of me, Clayton, and Evje. She's very shy and timid around other people until she feels comfortable with them. Hopefully this will improve once she is walking on her own and more confident with herself, but until then, if she glares at you when you touch her or talk to her, or if she starts crying if you try to pick her up, don't take it personally. She acts like that with everyone! Elsie is very loving and affectionate with her immediate family. She laughs more with Evje than with anyone else. She loves to sit on my lap and climbs all over me and Clayton. She loves to be touching me in any way that she can. In fact, I often have a hard time getting things done nowadays because Elsie is always holding on to one or both of my legs, one of my arms, or grabbing my hand. She loves to cuddle. Elsie is such a sweetheart, with a sunny, cheerful personality. At least, when no one else is around, that is :)

Happy 17 months, baby!