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.
Monday, August 18, 2014
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.
Sad!
Another article, which made me cry several times, said this:
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.
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:
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:
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!
Monday, May 19, 2014
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.
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.
Monday, May 5, 2014
16 months!
| Standing up like a pro! |
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! |
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