Goodbye, glasses!

Elsie had a check up with the opthamologist yesterday. The doctor dilated her pupils and checked her vision with and without her glasses on, and then out of nowhere, proclaimed that she no longer needs glasses. Um what?? I told him to shut up. The technician laughed. The doctor went on the explain what was going on. I will attempt to relate to you what he told me.

Apparently, Elsie's vision has improved; where she used to have normal vision in one eye and was farsighted in the other, she now has normal vision in one eye and is slightly nearsighted in the other. The reason she needed her glasses in the first place was that when there is unequal focus with farsightedness, the brain tends to ignore the farsighted image and will eventually only see out of the normal eye, creating a lazy eye. For reasons that I don't understand, the unequal focus with nearsightedness does not cause a problem with the brain. Hence, her glasses are no longer needed. He said that since we caught the initial problem so early, it was fixed with her glasses very quickly, and that we prevented her from having months and months of vision therapy. He will see her again in nine months. Chances are, she will need glasses in the future, especially with her parents' bad vision genetics, but he is hopeful that it won't be anytime soon. He also told me that he had only seen a handful of cases like this in his many years of eye doctor-hood.

I was so surprised at her not needing glasses anymore that when he asked if I had any questions, I couldn't think of anything. Of course, on the drive home, I had about 500 unanswered questions. Such as: what caused her vision to change? Will it continue to change and get more and more nearsighted? Is nine months too long to wait to check her eyes again? What exactly do you see when you wave your magic crystals in front of her dilated eyes?

As you can see, I don't really understand all of it, but I suppose I will trust that the opthamologist knows what he's talking about.

When I first found out in July that Elsie would need glasses, I was kind of devastated. I didn't know how we would keep glasses on a little baby. I didn't want one more thing to mark Elsie as different, or cause other people to stare at her. I was worried that her vision would get worse. But now, I'm actually kinda sad to see the glasses go. She is so adorable with them on. I like it when people look at her with them on, because it usually generates a positive response, like "What cute glasses on such a cute baby!" (What can I say, I love positive attention) They make her stand out, and mark her as a special baby who has overcome all the odds.

In reflection, her glasses are a visible reminder of all that she has overcome, but that shouldn't matter. I know all that she has overcome, and I don't need to look for praise and approval of others to know that Elsie is an adorable, special baby. She will still be an adorable, special, extraordinary baby, even without her glasses.

Until we see you again, so long, spectacles!

14 months!

And the time just keeps flying by. Elsie is 14 months old! 10 months adjusted!

• Elsie is a crawling pro and is getting into everything that she can reach! She loves being able to follow her big sister around the house. Big sister doesn't love Elsie getting into "her" toys so much, but maybe one day they'll share toys happily. Or not!
• She's working on pulling herself up to stand on furniture. She's still pretty shaky and cautious when we help her to stand up, but making lots of progress! I can't believe how far she has come since we started PT in October.
• Elsie had made a lot of progress with oral eating in the last few weeks. When we eat our family meals together, I'll place a few spoonfuls of whatever we're eating on her high chair tray, and she tastes the majority of the items. She still spits out nearly everything after she has tasted it, but she is keeping food in her mouth longer, and has swallowed tiny pieces here and there. She is actually eating a few pieces of yogurt melts because she's keeping them in her mouth longer and they melt before she can spit them out, ha ha. She is also making more chewing motions, which she hasn't done before. It's all really exciting. 
• Blended Diet is going great, we've added in a few more foods to her blends and for the most part, she is tolerating them very well. She still has instances of vomiting, either because she has gagged on something or if her tummy got too full too quickly, or if the moon wasn't properly aligned with the cosmos. You know, puke happens. But other than random vomiting here and there, it's going great and I love coming up with new things to blend for her.
• Elsie's personality is coming out more and more every day. She went through a "stranger danger" phase, which is completely understandable. After all, 97.895% of the time, she only sees me, her dad, and her sister. But I think she's gotten a little better. She has been so funny lately. She loves making silly noises like growling or doing funny things with her tongue. She loves it when someone chases her when she is crawling on the floor. Last night, I was chasing after her right before bedtime and she was laughing so hard. This morning when I got her out of bed, she was immediately in the same silly mood that she was in the night before. It cracks me up. 
• Elsie and Evje are officially sharing rooms now. Yes, since Elsie has been home from the NICU (June), she has been sleeping in the master bedroom, first in a bassinet, and then in a pack & play. It was just easier to have her in there with us, since she is still on continuous nighttime feeds and sometimes the pump alarm would go off, or she'd throw up in the night, or whatever. But she is a really noisy sleeper, and we decided that it was finally time to kick her out. I was worried that she and Evs would wake each other up, but they've done really well so far, only occasionally waking the other. Both of them have learned to sleep through minor disturbances, thank heavens. The first night that she slept in the other room, I was a little sad, and it worried me that I couldn't hear her anymore, but of course she was fine, and we all slept great.

Big girl happy crawler!

Note to self: don't try to take pictures right before naptime.

Sad face!

And here's some fun video of our little Cheeto-eater :)

Blended Diet

Last week on on Facebook, I think I confused a few people when I excitedly announced the arrival of our new Blendtec blender. I said that we would be using the blender to feed our tubie baby, and some commenters thought that I was blending food to feed Elsie orally. Well, as much as I wish that were the case, it just ain't happening right now. Elsie is still extremely limited on what she eats by mouth. She doesn't actually "eat" anything orally, she just tastes things and then spits them out. We did have a very exciting moment a few weeks ago when Elsie ate an entire Gerber cereal puff. It was pretty awesome, and I cried, but she hasn't eaten any since. She just sucks on them and spits them out. Same scenario with yogurt melts; she ate a piece of one once but hasn't repeated the amazing feat yet. Just sucks on them. She tastes lots of foods, which is very encouraging, and she's heading in the right direction for eating orally someday, but it's still going to take a long time. So anyway, we're not using the blender for oral foods. We are blending food to feed her through her tube.

There is a relatively new trend in the tube-feeding world, and it's called the Blended Diet, or Blenderized Diet. Let's call it "BD" on this post so that I can be lazy with my typing. The basis of the BD is that formula (what the majority of tube-fed babies/children/and even adults are typically fed), while great in certain situations, is not the best thing for your body to be fed for a prolonged period of time. The human body is designed to digest food: fruits, veggies, meat, grains, dairy. A slice of pizza. In many many instances, tubies who had a hard time with formula (chronic vomitting, constipation, retching, poor weight gain, and other digestive problems) have been able to improve their overall health when switching to a BD. I've said it before, but I'll say it again: if I wanted my kid to be on a formula-only diet, I would have saved myself a lot of trouble and stopped pumping breast milk a looooong time ago. Hence, when I heard about the BD, I knew that it was what I wanted to do for Elsie's tube feeds when we transition off of breast milk. So what exactly is BD?

BD is simply that, a blended diet. It is natural food blended into a thin enough consistency to be able to go through a feeding tube. One of the greatest things about BD is that you can individualize exactly what goes into your BD. Need to go gluten-free? No prob. Just don't add gluten to your blends. Need more calories? Add more calorie dense food to your blends. Dairy-free? Nut-free? Doritos-free? Easy. You can put virtually anything in your BD--or omit anything you don't want--and make it specific to your exact needs. Another benefit of the BD is that tubies are sometimes more likely to start eating orally when they are fed real, blended foods. The reason is that the tubies can "taste" the real food when they burp, they get familiar with the tastes, and are more likely to try foods orally because they recognize the taste. Not so much with formula. Have you ever tasted a formula burp? Gross.

There are a few different approaches to BD. Some people are very conscientious about calorie-counting; putting in very specific amounts of carbs, fats, and protein, in a specific amount of calories, to meet the tubie's dietary needs. Some people are all-organic, all-natural, wholesome foods only, etc etc etc. Some people, whose dietary needs are less strict, resort to simply blending whatever the rest of the family is eating. If the non-tubie family members are eating scrambled eggs and pancakes, that's what goes into the blender for the tubie. There's a blog that I've been reading about an adult with a feeding tube who, when his family goes to a restaurant, brings his Blendtec blender to the restaurant, orders off the menu, and has the kitchen staff blend his order so that he can "eat" it. BD is extremely versatile. As long as you are using a blender that can sufficiently blend the food and remove ALL chunks, you can blend just about anything.

We are just starting out on our BD journey. Elsie's doctors have recommended that she receive breast milk or formula as her main source of nutrition until her adjusted age is 12 months; same as any other baby. Since she will be 12 months adjusted in May, we are starting to introduce new foods so that her tummy can get used to other food besides milk. We've started out slowly, introducing one new food at a time, just like any other baby, to make sure that she doesn't have any adverse reactions. So far we have blended and tube-fed pears, peaches, sweet potatoes, applesauce, pinto beans, and brown rice with chicken broth. We mix her food with breast milk and either coconut oil or vegetable oil, for added calories and fat. And she's doing great so far! No digestive problems at all.

One of the few negative aspects of BD is the possibility of clogging the tube. As long as you have a high-powered blender OR you are sufficiently removing chunks via a fine strainer, clogs in the tube are easily avoided. However, I must admit, I clogged Elsie's tube for the very first time today. Ha ha. But really, it was my own fault because I was being lazy. I had previously cooked and blended brown rice with chicken broth, as I mentioned before, and had some in a container in the fridge that I was mixing in with Elsie's pears this afternoon. Since the rice had been in the fridge for a day or two, it had solidified, but could be easily stirred into the pears with a spoon. Or so I thought. Unfortunately, my spoon missed a chunk, and the chunk got stuck in her tube. Luckily, after making a big mess and trying for 15-20 minutes, I was able to push the clog through with some warm water. What I *should have* done, was throw the pears and rice into the blender before serving it, even though it was previously blended. The Blendtec would have smoothed out any offending chunks and prevented the clog. Lesson learned.

Anyway, that's the basics of the BD. Any questions? I'm so happy that I have a wholesome way of feeding my little tubie. Someday, someday she'll be able to eat by mouth and enjoy the taste of food. Someday she will find eating a pleasant experience. Until then, I'll be in my kitchen with my blender.

13 months!

Little miss Elsie is 13 months old today--Wow!!

We had a busy day today; it was Elsie's second appointment at the Neonatal Follow-up Clinic. This is a clinic where preemies are seen by several different providers a few times a year for the first few years of their life to make sure that they have the resources and referrals that they need to grow and succeed. That was a long sentence. You can read about Elsie's first visit to the NF Clinic here.

Today's visit was pretty great. We saw an audiologist, a nutritionist, a nurse-practitioner, and a physical therapist. All of them were thrilled with Elsie's progress and said that she's doing fantastic, of course, because she is.

She passed the hearing test with flying colors. The nutritionist said she's very pleased with Elsie's weight gain; she is at about the 50th percentile for height and the 30th percentile for weight and is consistent with staying on her curve (both height and weight here are for her adjusted age, not her actual age). She gave me some tips and resources on transitioning someday from Elsie's current breast milk-only diet to a blended food diet, which is more desirable than a formula/pediasure-only diet. Because let's be honest, if I wanted my baby to be exclusively fed formula, I would have stopped pumping a loooong time ago. Not that formula is evil. It's not.

The physical therapist's evaluation was great--remember how I said that I was excited to show her that Elsie could crawl and move out of the sitting position and prove her wrong--she was so thrilled to see Elsie mobile. Her low muscle tone is gone. She is meeting all of the milestones for a 9-month old baby (which is her adjusted age) with her motor skills. Her cognition, language perception, and expressed language are all within the normal limits of a 9-month old. A few things are above the 9-month range, and one or two things are below, so all in all, she is a typical 9-month old baby. Just not typical, because you know, she's a super special 13-month old in a 9-month old's body.

While we were at the clinic, I talked to another parent who was there with his 4 year old daughter. She was a 25-weeker and stayed in the NICU for seven months. She had a gtube, but has successfully been weaned from it and has had it removed for almost a year now. The dad told me to be patient and that it would happen for us. It was nice to talk to him and I'm happy that they no longer need the feeding tube, but the thing that stuck in my mind was that their kid was a 25-weeker and had a seven month NICU stay. Elsie was a 23-weeker. Five month NICU stay. Elsie is a pretty dang healthy baby. This little girl was . . . not as healthy. How did we get to be so lucky? How is it that Elsie is doing so well, when by all the odds, she should not have even survived? Why do some have physical or mental conditions and some do not? We'll never know the why's, but we are certainly always thankful for the miracles that we have had. We're thankful everyday for our little Elsie.

All bundled up! We went for a stroll a few days ago. I get tired of being in the
 house all day every day. It was chilly (40-ish degrees) but we had fun, as you
can see by the expression on her face, ha ha.

Glasses on, check. Hair combed over, check. Stogie--I mean, Tootsie Roll--in mouth, check.
Cutest old man--I mean, baby girl--ever!

And here we are, chilling on the floor of the clinic today. Good times
were had by all!

My loves

This one:

Sometimes I have somewhat irrational worries that Elsie doesn't have as close of an attachment to us since she was hospitalized for the first five months of her life. She's not super snuggly and when it comes to going to sleep, she'd much rather be placed in her own bed with a blanky instead of being rocked or cuddled to sleep. Don't get me wrong, I love that she goes to sleep so incredibly easily, but sometimes my irrational fears start rearing their ugly head and whisper mean things to me like, "She doesn't love you like other babies love their mommies" or "She's developing a sensory processing disorder or autism or some other scary disorder and she'll come to hate being touched, like when she was in the NICU." For the most part, these fears are just that, irrational fears, but sometimes fears creep into your mind and won't leave. Until you have moments of affirmation that your child does, in fact, love you. Moments where you are the only one that she turns to for comfort or reassurance, when she looks around the room until she finds you and then smiles, when she crawls over to you and tries to climb into your lap, when she turns constantly to touch you or to make sure you are still there while she is playing. She is my child and she loves me.

PS, she's crawling forward now :) No more backwards crawling!

This one:

Evje, on the other hand, is super snuggly. She loves hugs and kisses, loves to be held, loves to sit on our laps. She's my snuggle-bug. And despite my frequent impatience with her two year old behaviors, she still loves me with an unconditional love. She looks to me for comfort when she is hurt, sick, or afraid. She loves to help me make cookies or dinner, and we have so much fun together. She was my firstborn, the one who made me a mommy after a long wait. She is my child, and she loves me.

This one:

He is my rock, my partner in crime. He helps me with the children and dances with them around the kitchen. He sings ridiculously funny made-up lyrics to songs that he can't remember the real words. He leaves me notes and sends me sweet text messages. He wakes up early with the toddler on weekends and lets me sleep in with the baby. He surprises me with thoughtful gifts, and comforts me when I need comforting. He is incredibly good-looking in all of his cowboy gear on the back of a horse. He is my husband, and he loves me.

As the song goes, these are a few of my favorite things. I love them.

12 months!

Elsie has made a lot of progress on her motor development during the last month! Here's a few of the things that have been going on:

• Elsie is crawling on her hands and knees! Ok, well, she can crawl backwards :) She can army crawl forward a few steps, but hasn't quite figured out how to shift out of reverse and go forward on her hands and knees. It's pretty funny to watch her; she'll go backwards until she runs into a wall or other obstacle, and then gets stuck until someone helps her out of the predicament. Silly girl. She'll get the hang of going forward soon.
• Sitting up on her own! 
• Elsie can now stand with support for about 10-15 seconds. Just a week or two ago, she could only stand for a few seconds before her legs would buckle. Now, with one of us supporting her around the waist, she can stand against the couch and reach for objects. Not a big deal to some, but such a big deal here!
• Elsie learned how to go from lying down or crawling to sitting up, and from sitting up to crawling. This is a pretty big one to me personally; back in September we had our first visit at the Neonatal Follow-up Clinic, and the physical therapist there was a little discouraging. At the time, Elsie had low muscle tone and was a few months behind developmentally. I knew she was a little behind, but thought that Elsie was doing dang good regardless, especially when you think of all of the things she has gone through and overcome. But this physical therapist, while giving us some ideas of things to help Elsie get stronger, made a comment that stuck in my mind. She said something like, "I bet Elsie will be one of those babies who can sit up when someone sits her up, and will play sitting up for long periods of time because she won't know how to get herself out of the sitting position. She'll have a hard time learning how to change positions and become mobile." She wasn't saying it to be mean, she was trying to be motivational, like "Prove me wrong at the next time we see you by working really hard on this!" but was pretty sure that her prediction would be right. Our next appointment at the follow-up clinic will be sometime in February, and I can't wait to prove that therapist wrong. Elsie will be even stronger and faster by then. She continues to overcome her challenges and is proving everyone wrong all the time.

All of these amazing new developments started to take place right around Christmas time, and she is growing stronger and more confident in her new skills every day. Elsie is such a happy baby and it is so much fun to watch her learn new things. We just had her 12 month check up with the pediatrician, who is very pleased with her development. Elsie is weighing in at just under 17 pounds, and is about 26.5 inches long. For her actual age, she is just a little bit under the curve on the growth charts, but for her adjusted age (8 months) she is in about the 25th percentile for both height and weight. Considering that Miss Skinny-pants Evje was only 16 pounds and not on the curve at all when she turned one, I'm pretty happy with Elsie's growth.

There haven't been a lot of new changes with her feedings, just doing the same old stuff. Our feeding therapy appointment in December was cancelled because of a big snowstorm, so we don't get to see our fun therapist Helene until the end of January.

On Elsie's birthday, we kept things pretty low-key, considering that we are not supposed to have crowds around Elsie to protect her from RSV and other diseases. We had a small celebration with just the four of us, with cupcakes and a few presents. Elsie didn't eat her cupcake at all besides a few licks of the frosting on her fingers, despite the fact that it was cream cheese frosting which she has previously enjoyed. But we weren't expecting her to eat very much, so it wasn't too disappointing. And while we were singing happy birthday, Evje was throwing a fit and crying loudly because her cupcake did not have a birthday candle on it, so that was a special moment. And she didn't understand why Elsie got presents and she didn't, so we took a few of her already opened Christmas presents and wrapped them in a bit of newspaper so that Evje had some "presents" to open. Ahh, life is so confusing when you are two. Anyway, we're planning a birthday celebration for our families to join with us either in May or June. Maybe by then Elsie will be able to more fully enjoy some birthday cake.

Thanks for sticking with us during this eventful first year of Elsie's life! It's been quite a rollercoaster ride and we've been so thankful to have all of you supporting our little family.

Happy birthday Elsie!

One year ago, our day started out with this:

I was 23 weeks pregnant, and our cute little toddler Evje had a check-up at the pediatrician's office. I was hustling her out to the car so that we wouldn't be late. My hands were full with the diaper bag plus some other random stuff I was taking to the car, and my back was hurting, so being a mean mom, I made Evje walk to the car beside me. We had just gotten to the car, which was parked on the street, when Evje lost her footing and face-planted onto the pavement. She didn't put her hands out to catch herself because she was holding graham crackers, and her face caught the brunt of the fall. Poor baby! You can't see it very well in the picture, but she had a pretty good sized lump on her forehead. Anyway, we went to the doctor for her check-up and he made sure that her face was ok. I felt like the worst mom ever!

For the rest of the day, I just wasn't feeling right. I thought perhaps I was catching the cold that my husband and Evje had had earlier in the week. My back continued to ache, and I had gross amounts of mucus coming from "down there" when I used the bathroom. I took a nap when Evje was napping, but it didn't seem to help.

Looking back, it's easy to see that my back ache was actually early labor pains, and the mucus was actually my mucus plug. At the time, I honestly didn't know what was going on, but I was getting worried that something wasn't right. It had been such an easy pregnancy up until this point, so I never would have guessed what was about to happen.

Clayton and I went to the hospital just to get checked out, feeling very foolish, hoping that we were making a big deal out of nothing and would be sent home. I'll never forget the look on the nurse's face when she announced that I was already dilated to 6 cm. That was when I started getting scared.

Flying on the helicopter to Salt Lake City. I remember how painful it was to be strapped down on the gurney, lying on my back and unable to move into a comfortable position during contractions. I was so scared and desperately wanted comfort. I begged the nurse on the helicopter to hold my hand.

They wheeled me into the hospital and I saw a glimpse of my dear parents, waiting anxiously. Clayton hadn't arrived yet. In fact, neither he nor I had ever been to the University of Utah hospital before, and I was worried that he wouldn't be able to find it, especially in his current state of mind.

In the delivery room. No time for pain relievers. No time for a c-section, which would have helped protect her delicate body from the trauma of birth. The baby was on her way within moments of our arrival. I screamed with the agonizing pain. My mind was in anguish, wanting so desperately to keep my precious baby safe inside me, but my body was cruelly pushing her out.

Recovery. I felt empty. My hands kept creeping toward my belly, only to find nothing there. So thankful to finally have Clayton with me, as well as my parents, my sister, my brother. I was numb.

After several hours, we were given permission to see her. I didn't want to. I was scared to see the child who was born way, way too early. Her face and head were completely black with bruises, her extremely delicate blood vessels having been crushed during birth. Her eyes (still fused shut) were covered to protect them from the bilirubin lights.There were more machines, tubes, and wires coming from her tiny body then I thought possible. I searched desperately to find something, anything, that wasn't harmed or covered with machinery, something that would help me recognize that this was indeed my baby, and I suddenly found great comfort in her fingers and toes. All babies have fingers and toes, and so did Elsie, albeit extremely tiny ones. Here was something, something, that was normal.

We went through a lot during our NICU stay. Elsie was hospitalized for 160 days, that's about five and a half months, and was released on June 13, more than a month past her original due date of May 3. She had PDA ligation surgery on January 17, which was the repairing of an open valve in her heart. She suffered a Grade 2 bleed on the right side of her brain, and a Grade 4 bleed on the left, Grade 1 being minor and Grade 4 being the worst that it can be. Elsie contracted pneumonia when she was about six weeks old, or 29 weeks gestation. She developed Retinopathy of Prematurity, or ROP, which is an eye disease, and had two laser surgeries to prevent the disease from causing blindness. She struggled to learn how to eat by mouth and eventually developed an oral aversion, due to five and a half months of having tubes down her throat. This means that Elsie became uncomfortable with anything in or even near her mouth, including food. She had a gastrostomy tube placed, which is a feeding tube that goes directly from the outside of her abdomen into her stomach, bypassing her throat altogether.

A year later, we go to feeding therapy. We go to physical therapy. We go to opthamologist appointments. GI appointments. Neo-natal follow-up appointments. Monthly pediatrician appointments. Doctors appointments and therapy are a fact of life nowadays.

And yet, through it all, Elsie is thriving.

Elsie is a happy, easy-going baby who loves her mommy and daddy, adores her big sister, and likes to pet the doggies and take baths. She is more patient and determined than I have ever been. Her determination astonishes me. She has overcome so many challenges in her short life, and has amazed several doctors and medical professionals.

Elsie has blessed our lives in so many ways. She has brought our family together into a tight, cohesive unit, full of faith, full of prayers of thanksgiving. We have been blessed. We have seen miracles.

It has been quite the year. I don't know that I'd like to ever go through it again, but I wouldn't change any of our experiences. We have all grown so much because of Elsie's birth.

We love you, Elsie. Happy first birthday!