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.

Sad!

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.

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!

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!

Consider the lilies . . .

Yesterday afternoon, as I was cleaning up yet another mess of throw up and feeling sorry for myself and Elsie, I paused as one of my favorite songs came on the radio.

https://www.youtube.com/watch?v=cDFBBbhwmfk

Consider the lilies of the field,
How they grow, how they grow.
Consider the birds in the sky,
How they fly, how they fly.

He clothes the lilies of the field.
He feeds the birds in the sky.
And He will feed those who trust Him,
And guide them with His eye.

Consider the sheep of His fold,
How they follow where He leads.
Though the path may wind across the mountains,
He knows the meadows where they feed.

He clothes the lilies of the field.
He feeds the birds in the sky,
And He will feed those who trust Him,
And guide them with His eye.

Consider the sweet, tender children
Who must suffer on this earth.
The pains of all of them He carried
From the day of His birth.

He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold.

He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold.

I've always loved this song, and it never fails to bring a tear to my eye, especially the part about the "sweet tender children". But this time, I noticed a specific word that I've never noticed in the song before, and it hit a very tender spot in my heart. It says that He will "feed" those who trust Him. He will feed us, if we trust him. 

Feeding has by far been the biggest challenge for Elsie. There have been times when I've cried in frustration when she won't eat, when I've had to hand the vomit-covered baby to Clayton and go hide myself in the bathroom until I could control my emotions, or when I've wanted to throw a spoon across the room because Elsie has refused to let it near her mouth. I just cannot mentally understand her fear of eating. I mean, I can understand, but I guess the word I'm looking for is empathize. I cannot empathize with her fear of eating. I love eating; in fact, I love it too much, and it frustrates me to no end that something so seemingly natural and easy should be so difficult. It frustrates me that her progress is always "one step forward, two steps backward." She'll be doing so well with oral eating practice, and then catch a cold or cut a tooth, and then oral eating shuts down completely and we have to start all over. Or she'll practice a new skill at therapy and do really well, and I'll get so excited, only for her to refuse to do the same skill at home with me.  

And then there's the puking. Elsie throws up at least once almost every single day. Things that can cause vomit include but are not limited to: feeding her too quickly, feeding her too much, Elsie choking/gagging on something in her mouth while she is being fed or immediately after she has been fed, Elsie crying too hard while she is being fed or immediately after she has been fed, coughing too hard, gagging on mucous drainage in her throat, and several other reasons, one of which also being "I have no idea why she threw up, but she did." All of these things are exacerbated times ten when she has a cold or isn't feeling well. It's extremely frustrating and disappointing to work so hard to feed her and help her to gain weight, only to have all of our work undone by vomiting up the food. 

Luckily, Elsie is currently in good health, knock on wood, and the puking has been less intense lately. It still happens, but isn't as bad as it has been. Anyway, the point of all my complaining is that feeding issues are very sensitive to me. It is a huge challenge that we deal with every day. It's getting better, and will slowly improve with time, but it's very hard.

When I heard the lyrics of that song yesterday, it struck me hard that He will feed us. What exactly does that mean? Is Jesus going to come to my kitchen with a spoon and jar of baby food? No. But I thought of the story in the New Testament when He feeds the multitudes with a few fishes and loaves of bread. I thought of Him eating the Passover meal with the apostles and instituting the sacrament. I thought of Him eating with the disciples at the home of Mary and Martha, and his gentle admonishment to Martha. There's so many stories of Christ's life and ministry, but not one where He commands a baby with an eating disorder to stop throwing up and start eating with her mouth. But wait. There were times when He healed the sick. He healed the lepers. He raised Lazarus from the dead. All of these miraculous deeds and so much more were brought to pass by His power of the priesthood, and by faith. 

I know that someday Elsie won't need her feeding tube anymore, but until that day, I need to have faith and trust that it will all be ok. I need to have faith in myself that I am doing the best that I can to nurture my child. I need to have faith in Elsie and help her to believe in herself as well. She can do this. She can overcome this trial, after all the huge obstacles so far in her short life. It might take longer than I would like, but that's ok, and I need to believe that it is ok. I need to put my trust in Him. He understands what we're going through, and He is always there for us to turn to. 

He will feed those who trust him ... He will heal those who trust him.

16 months!

Standing up like a pro!

April is usually one of my favorite months of the year, and it was still pretty great, but I'm glad it's over. Due to Elsie and Evje catching a series of colds/infections, April was full of boogers, sneezing "snot rockets" (you know what I mean: when sneezing causes boogers to shoot out of the nose all the way down to the chin), sleepless nights, and puke. Lots and lots of puke.

Elsie's gag reflex is so very sensitive that when she has "mucus" drainage, aka boogers going down her throat, it makes her gag and then vomit All The Time. Also, when she gets phlegm into her throat/chest, making her cough, it makes her gag and then vomit All The Time. I had a random moment of contemplation, when I was trying to put myself in her situation. I thought of when I was pregnant and as most pregnant ladies have experienced, your gag reflex at this time is usually pretty sensitive. I know there were several times during my pregnancies that I coughed or even sneezed hard enough to make myself gag. Elsie's gag reflex is on super high alert All The Time, so when she has a respiratory infection, aka cold, she gags even more than normal. This means that if she is gagging, coughing, or sneezing right after or during a meal, she'll throw up. It's inevitable. And during her continuous night-time feedings, when her throat gets dry and she starts coughing, you know what that means ... more puke.

When I'm getting pressure on every side for Elsie to gain weight, throwing up is not what we want. It has been very stressful and frustrating, to say the least. At times I've felt like giving up, or at least like throwing the feeding syringe across the room. I've been trying my hardest to feed her high-calorie, nutritious food, but I can't stop the vomiting. At the same time, I feel so bad for poor Elsie, puking all the time. I know that's not fun or comfortable for her. She has understandably had a decreased interest in oral eating, and I can't say that I blame her.

Anyway, enough complaining. Just know that it sucked. And that most of mine and Elsie's clothes and her sheets now have vomit stains. She is getting better, so we're back to normal amounts of vomit. Ha ha.

In between the puking sessions, April was pretty great! Even though it was a bit early, we declared ourselves free of RSV isolation, and brought Elsie with us wherever we went. We went on a trip to the zoo, to the local indoor swimming pool, and had a picnic in the canyon. We celebrated Easter, and enjoyed playing at the park and outside in the yard. Elsie was also able to come to church with us for the first time since October, which was pretty darn exciting. It's so nice for all of us to be together as a family wherever we go. We are complete.

Developmentally, Elsie is still moving right along and is where she should be. She's still cruising on the furniture and pulling herself up to stand. No independent steps yet, but she'll get there. Elsie is very cautious by nature and is taking her time with this skill until she knows she can do it right. She loves playing with her sister, and snuggling with mom and dad. AND she finally got her first tooth! One cute little toothie, right in the middle of her mouth.

Can't wait to see what this next month will bring!

Here's a peek at that little toothie

Always has something in her mouth, except food ...

We just love this happy little face!

15 months!

Well, here we are, another month older and wiser, too!

Here's your Elsie factoids for the month:

• Still crawling around like crazy. And can now pull herself up to stand and cruise along furniture. Her balance is improving day by day, and she'll be taking her first steps before we know it!
• Into absolutely everything--I mean, I kinda forgot what it's like to have a young toddler who opens all the cabinets and reaches into the toilet and pulls things out of drawers. Now we have two young mess-makers in the family!
• She's in that annoying phase where she sees a miniscule piece of lint/dirt/whatever on the floor and picks it up and immediately pops it into her mouth. I usually wouldn't mind, because I'm not one of those germ-freak moms who is appalled at her child putting things in her mouth. The thing that drives me bonkers is that she'll put something in her mouth, work it around with her tongue a bit, and then more often than not, will gag on the item, retch, and then puke up whatever food I had just worked so hard to get into her belly. Needless to say, we're sweeping and vacuuming a lot more than normal, but she still manages to find things to put in her mouth and gag on.
• Oral eating has taken a little bit of a setback this last week due to Elsie not feeling well. She's had a runny nose for several days; I'm not sure if she's getting a cold or teething or maybe has some spring allergies. Whatever it is, it's making her not be interested in food at all. It's really frustrating, since she had been doing soooo well at tasting everything, but it's a hurdle that we'll just have to be patient and eventually overcome.
• Speaking of teething, Elsie is still a toothless wonder. It's kinda nice, actually, but I'm sure when her teeth finally start coming, they'll all come at once and will be a doozy to deal with.
• Hopefully only a month or so left of our RSV isolation. The following respiratory germs are still active at  high levels in Utah: RSV, Rhinovirus, Coronavirus, Adenovirus, and Pertussis. Please, I hate to always be saying this, and I'm sure you're tired of hearing it, but please don't come over if you or your kids are sick, or have been recently exposed to people who are ill. It's hard for me to say no to people, so help a sister out and stay away if you are sick. We've been lucky to avoid any hospitalizations so far, knock on wood, and we'd like to keep it that way! 

Can you believe it, a year ago today, we were worrying about Elsie's ROP getting worse and the possibility of laser surgery. Plus, we were waiting the results from Elsie's 36-week brain ultrasound, and were anxious that we would get bad news about the condition of her brain after her brain bleeds. You've come a long way, baby!

Ode to my Blendtec blender

What is this disgusting-looking green goop, you ask? That's Elsie's lunch.

Not all of it at once, of course, but enough for several days and to add to our freezer stash.

In case anyone has any doubts about my love for our new Blendtec blender, I've decided to dedicate yet another blog post about good ol' Blendy. And lest you think I am bragging about the superiority of my blender, keep in mind that I have never owned a high-powered, top of the line appliance, or car, or anything, really. Most everything that I've owned has been second-hand or generic brand or fairly low-medium quality. So, yes, I am excited about the awesome blender, and I apologize if it seems like bragging. It's just the coolest thing I've ever owned.

What do we blend for Elsie's food, you ask? Well, just about anything. We started out with one food at a time, to make sure that she didn't have anything allergies or negative reactions. Typical "baby's first solid food" foods like apples, pears, peaches, sweet potatoes, carrots, etc. We would add a few tablespoons of food to Elsie's milk and then wait for a few days before introducing a new food. We've been experimenting with her blended food diet now for several weeks, and Elsie's repertoire of foods has expanded enough that we can blend multiple foods together for added calories and nutrition. Lately I've been purchasing fresh produce through Bountiful Baskets, so whatever arrives with our basket is what I will throw in the blender. If I don't have anything fresh on hand, I have also blended leftovers from our family's meals, such as beef stew or meatball soup.

For example: Saturday's blend consisted of spinach, asparagus, celery, mushrooms, bok choy, plus some frozen peas, wheat germ, and flax seed. I threw it all in a pot, let it simmer in some water for 15 minutes or so, then threw it all in the blender. It turned out beautifully, and didn't taste too bad, either.

Yesterday's blend was some chicken and vegetables that I roasted in the oven before blending: two chicken thighs (more calories and fat than chicken breasts), a sweet potato, several carrots, half an onion, some leftover bok choy, and celery. When I put it in the blender, I added a handful or two of Multi-Grain Cheerios and a spoonful of wheat germ for some added carbohydrates and grains, plus a handful of frozen green beans and peas. This blend is the one in the picture above. Pretty gross-looking, I know, but it's full of nutritional goodness!

Some tubie-blender families make a large batch of the same nutritionally-complete blend that they use for each meal of the day. I'm not saying that this is a bad thing, but it's not what I choose to do. I try to make Elsie's meals more like a typical oral meal. Here's what I mean by that: for breakfast, Elsie is tube-fed a blend of Cream of Wheat cereal, plus a fruit, plus some coconut oil for extra calories, plus her milk. Sometimes I'll add a teaspoon of flax seed, just for fun. Pretty typical breakfast of cereal and fruit, right? Lunch is usually a protein/vegetable blend, like the roasted chicken and veggies I mentioned before, plus milk. A snack in the afternoon is a fruit or veggie blend, sometimes with a graham cracker or some Cheerios blended in. And dinner is veggies and milk. She's also still on continuous feeds overnight, milk only. So as you can see, her meals are pretty typical to what an oral eating child might eat, just in pureed form. She is offered food on her high chair tray to munch on while being tube-fed to try to increase her oral eating skills.

I know it sounds ridiculous, but I honestly get a thrill when I watch whole, healthy foods being pureed into a smooth blend that I can feed my child. She is fed more healthy foods than the rest of us eat, that's for sure. I was giggling in the grocery store the other day when I saw Elsie's foods in our shopping cart mixed in with the food for everyone else: wheat germ, quinoa, walnuts and almonds compared to frozen pizza, Cheetos, and Oreos. Of course, I rationalize the Cheetos and Oreos by telling myself that I am only buying them to tempt Elsie's palate. Ha ha. I am excited for more fruits and vegetables to come in season this summer so that we can stock up and freeze them to add to Elsie's blends. If you have any extra produce that you're wanting to get rid of, we'll take it!

Anyway. We love being able to blend Elsie's food, and we love our Blendtec blender. Don't worry, this will not be the last that you'll hear about it, I'm sure.

Isn't it lovely??