Saturday, December 21, 2013

Dec. 21

It's been a few weeks since our last post and I figured everyone could use a dose of Elsie cuteness before Christmas, so here ya go:

video


video

Just a little glimpse of what our little cutie is up to these days! (Don't mind the Mickey Mouse cartoon playing in the background) She's rolling, scooting backwards, and wiggling all around. She has been getting up on her hands and knees for a few days now and is as pleased as punch with herself whenever she does it; I do believe that we'll have a crawler here before long! She's just a happy little baby, and it's so exciting to watch her learn and grow.

On the eating front, here's a few random things that Elsie has enjoyed tasting lately: mashed potatoes and gravy, cream of chicken & herb soup, yogurt, spaghetti sauce, mild enchilada sauce, and a bunch more. She doesn't like spoons being shoved in her mouth, so I dip her spoon in the food, then put the spoon on her tray or hand the spoon to her, and most of the time, she eagerly picks it up and puts it in her mouth. Of course, Elsie's coordination is not perfect, and just like any other baby learning to self-feed, she ends up with most of the food on her face, in her hair, all over the high chair, or thrown overboard to feed the doggies. She gets some good tastes in here and there, and has been doing a little better at not spitting everything out. She's still not actually consuming an amount that a typical baby would eat, it's very very small amounts, but we're taking baby steps, and she's making great progress.

We found two things lately that Elsie has actually really enjoyed tasting, and they are cream cheese frosting and a pretzel stick dipped in pickle juice. She had about three spoonfuls of the frosting and seemed to really like it. No spitting out or gagging at all! And, I know the pickle juice is random, but I've heard that babies/kids with eating disorders can do really well with pickles and other strongly flavored foods, because they can tell exactly where the food is in their mouth, which is important. So I took one of her big pretzel sticks and dipped it into the pickle juice and handed it to her. She made a funny face at first, but then sucked on the pretzel pretty eagerly. I dipped it in the juice again and she accepted it a second time, and on the third time, she OPENED HER MOUTH for more!! She has never voluntarily opened her mouth for food like that, completely on her own with no prodding. It was so cool! The funny thing is that if I hand her a pickle, she isn't very impressed and usually throws it on the floor. Don't know if it's because the pickle just came out of the fridge and is cold, or the texture, or what, but oh well. She sure does love her pretzels & pickle juice. Funny girl.

Can't believe she's going to be ONE in just two weeks!

She was sitting in her high chair while getting her food via her tube
and got so sleepy. She sat like this for the last five minutes of tubing.
Poor little lamb!




Merry Christmas!


Tuesday, December 3, 2013

11/7 months!

Wow, Elsie is ELEVEN months old! You know what that means, one year is just around the corner. I was thinking to myself today, "Maybe I should start thinking about what we're going to do for Elsie's birthday. Nah, I'll wait until after Christmas." And then it occurred to me to me that Elsie's birthday is like a week after Christmas and will be here before we know it. Ha ha.

Elsie is doing great. She had a few little colds here and there but nothing terrible. She's made a lot of improvements this month in her gross motor skills. It's so exciting to watch her learn new things.

We're still in about the same place as far as oral feedings go; Elsie still will not eat purees or very much of anything by mouth. But she is doing great with her "hard munchables". Elsie will pick up and put in her mouth just about anything that we put on her highchair tray. She doesn't eat them, remember, but she sucks on things and practices chewing with her teethless gums. Some of Elsie's favorite munchables are honey wheat pretzels, regular pretzels, licorice sticks, raw green beans, and celery sticks. Oh, and Cheetos. What can I say, she is her mother's daughter! Other things that we've tried and had some success with are chicken-n-biscuit crackers, bbq-flavored Wheat Thins, dried mango slices, Nilla Wafers, apple slices, big chunks of turkey, and oh there's a bunch more, but I can't think of anything else right now. Elsie also likes to do it herself; if we put a spoon on her tray with some food on it, she'll pick it up and (usually) put it in her mouth. Of course, once she discovers that there was food on the spoon, she spits it out, but, still, it's a good step. Or we put a blob of food on her tray and let her play with it, dip her pretzels in it, and make messes. Things she's "eaten" this way are applesauce, gravy, mashed potatoes, Spaghetti-O's, sweet potatoes, Ranch dressing, strawberry jam, and chocolate frosting. She still spits out the majority of any food that ends up in her mouth if she hasn't put it there herself. But, on a positive note, she is tasting lots of different foods and that is a good thing.

Elsie had a check-up this month with the eye doctor. It was pretty quick; he told us that Elsie's vision is normal when she wears her glasses, which means that the glasses are doing their job, and to keep wearing the glasses. We'll see him again in March.

We haven't started the Synagis shots yet, which is good, that means that RSV is not rampant around our state yet. But with the snow and cold weather that has recently arrived, I'm guessing RSV will start rearing its ugly head very soon. Please don't come over if you or your kids are sick!!!

Elsie finally decided to roll over all the way onto her tummy a few weeks ago, as I mentioned in my last post. She now uses rolling as a mode of transportation and rolls all around on the floor to get to new and exciting places, like under the footrest of the recliner. She is more predisposed to roll to her right, so sometimes she'll roll herself up to a wall and get stuck, not yet figuring out that she can roll the other direction to get away from the wall. Elsie spends more and more time playing on her tummy, which is beneficial in so many ways. Tummy time is huge for development. She's really putting things together very quickly lately. It's pretty exciting. Our physical therapist says she wouldn't be surprised if Elsie were at least army crawling by her birthday. We'll see!

Annabeth and Elsie, best cousin friends

Little E and Big E
PS, that's a pretty cute owl on Elsie's shirt, don't ya think?

Silly girls!

This is the expression on the majority of Elsie's pictures. She gets transfixed
by the orange glowing light on the camera.

"Yeah, I'm a big girl on my tummy!"

Sunday, November 17, 2013

World Prematurity Day

November 17 is World Prematurity Day, which is apparently observed all over the globe. Perhaps you've not heard of it before, I know I never have. But today I'm seeing pictures on Facebook from all around the world of buildings and landmarks that are being lit up in purple to observe this special day. It's pretty neat. Mostly it just brings awareness that prematurity is a world-wide problem, as well as celebrating, honoring, and remembering babies that were born too early.

When Elsie was born, we had dozens of phone calls, texts, visits, and messages from parents of preemies, or friends/relatives of preemies. Everyone wanted to share their story and give us hope. We loved hearing each and every story. It gave us comfort and hope in a very scary time. Until Elsie's birth, I wasn't aware of how many people I knew that had premature children. Turns out that there are quite a few, and probably a bunch more that I'm not aware of.

Not all preemie stories have happy endings, however. To all of the families with stillborn angels, late-term miscarriages, preemies with severe health problems, or babies who died after birth, my heart aches for you. I don't want to say anything else, it's all too cliche and trite. But know that we love you and grieve with you.

For whatever reason, our special preemie is doing well. Her biggest setback currently (at least I feel it's her biggest setback) is her dysphagia, or her eating disorder. Being dependent on a feeding tube is not fun. I've been having lots of thoughts about it lately and wish that I had been more informed before Elsie's gtube was placed. But it's something that can and someday will improve, so I can't complain too much. She's making small bits of progress here and there, I just need to be more patient. A good thing is that she really enjoys picking up her own food and putting it in her mouth, and she's getting old enough to be doing that better and better. She doesn't eat it, she just chews and sucks on things like pretzels and licorice, but it's still a big step towards eating. Our most exciting moment lately was dipping a pretzel in ranch dressing, and she seemed to enjoy it quite a bit, and swallowed it. Most of the time when she has any food in her mouth, be it purees, milk, or pretzel crumbs, she spits it out. So swallowing a tiny bit of ranch dressing was pretty exciting.

It's blurry but I was in a hurry to capture the ranch dressing moment.

And more exciting news: Elsie finally got strong enough and had the desire to roll over from her back to her tummy. She's been able to roll from side to side for quite some time now, but never all the way onto her stomach. I figured she would do it when she was ready. And last Tuesday, she did! We were so proud and so excited. The first day, she did it once; the next day, three times; and every day after that, she can do it almost effortlessly. I know to most parents, rolling over is not a huge deal. I mean, Evje rolled over pretty early, and I took it for granted. But I'm pretty dang excited about Elsie being able to roll over. It means that she's catching up developmentally to where she should be.

In celebration of World Prematurity Day, here's a few pictures from Elsie's days in the NICU. Seems like forever ago, but sometimes it also seems like just a few weeks ago.







And here's our little sweetheart, happy and healthy at 10.5 months actual age, 6.5 months adjusted age.


To me, Elsie's story reminds me to never give up hoping and believing. Never stop believing in miracles. I don't, because I live with one. Happy World Prematurity Day. Hug a preemie that you know today!

Sunday, November 3, 2013

10/6 months!

Wow, Elsie will be ten months old tomorrow! Crazy how the time has flown by so quickly. I think I say that every month, but it really does.


Not a ton has gone on in the last few weeks, so there's not a whole lot to say. But I'm pretty good at rambling so let's see if I can turn that "not a whole lot to say" into several really long paragraphs.

RSV and cold/flu season is upon us, which means that we are limiting the places where we take Elsie these days. If there will be a lot of children or big crowds of people, we unfortunately can't take her with us. The risk of her catching RSV and having to be re-hospitalized is too great. I read a bunch of stories on various preemie websites about babies that had to be hospitalized due to serious illness from RSV, and even babies who have died from it. Scared the crap out of me. Needless to say, we are trying to be very careful about germs and limiting her exposure to sick people. Sanitizer is our friend. On a positive note, our area has not yet seen a big outbreak of RSV yet this season. Once Primary Children's Hospital has reached a certain amount of cases of RSV, then they will send a statewide alert to pediatricians and doctors offices, giving "permission" for them to start administering the Synagis shots. Have I told you about those yet? Synagis is not technically a vaccine for RSV, as it won't prevent the illness, but if a baby catches RSV after having had the shots, it will help to make their illness not as bad. The shots are given once a month during RSV season and are extremely expensive, which is why the doctors have to wait to get authorization before they can administer the shots. They have very strict guidelines about who qualifies for Synagis, but luckily (or unluckily, ha ha), Elsie meets like three different qualifications because of her prematurity and chronic lung disease. So as soon as we hear from the doctor, then Elsie will get the Synagis shots until April. Yay for shots once a month! Not.

We had an awesome feeding therapy session this month. Helene introduced Elsie to "hard munchables", or food that she can put in her mouth not necessarily to eat, but more to experience different flavors, textures, and to practice chewing. We had been at a bit of a stalemate lately with the baby food purees; it was hit or miss on whether Elsie felt like eating it or not. Sometimes she'd enjoy it, but a lot of the time would turn her head and clamp her lips shut to avoid the spoon. And so we gave the hard munchables a try. We gave Elsie pretzels and licorice sticks, what a fun combination, and she was so fun to watch as she tried these new flavors. She did really well and seemed to enjoy herself. Helene also suggested that instead of just baby food, which can be a little bland, to tempt Elsie's palate with purees that have more taste and flavor, like adding cinnamon and butter to pureed fruit, and spices or salt to veggies, etc. Since Elsie gets all of her essential nutrition through her G tube, we're not worried right now if she eats unhealthy food by mouth. We are just trying to get her interested in eating and for her to enjoy eating. So we came home, I ran to the store to buy a bunch of things on the list that Helene gave me (beef jerky, dried mango strips, those big thick pretzel sticks, and a bunch of Twizzlers, to name a few), and was so excited to show Clayton Elsie's new skill. Gave her a big pretzel and . . . she threw it on the floor. Tried all of the techniques that Helene showed me while we were at therapy, and Elsie wanted nothing to do with it. Mixed up some "flavored" fruit puree, and she hated it. Started crying, even. Sigh. This is why I want Helene to come live in my basement and take over as Elsie's personal feeding coach for the rest of her life. Ha ha, not really, but it seems like magical things always happen while we are in Helene's office, regardless if it is me or Helene who is working with Elsie, but then I can never re-create the magic when we get home. It's very frustrating! Since then, we still try to encourage Elsie to eat by mouth, and the majority of the time, she turns her head away, but sometimes she will have a few spoonfuls of food or will put the dang pretzel in her mouth. Then there was the time a few days ago at my sister's house where Elsie chomped on a Twizzler for a good ten minutes or so and got red stickiness all over her face and hands, not to mention all over my shirt, and I was thrilled. It's a long and frustrating road, but we are taking little tiny baby steps and ever so slowly, we are progressing.

We had our first physical therapy session with DDI, which is our local branch of Early Intervention. Basically, I loved it because the therapist pointed out everything that Elsie was doing awesome at, which just seemed like ordinary things to me, but she explained how hard Elsie was working and how this step would lead to the next step and the next and the next, and I realized how well Elsie is doing, despite all of my worries. She has overcome so many obstacles so far, and yes, she is a little behind in some of her skills, but she's getting there. She will continue to overcome and conquer.

Tasting a cracker

Pretzel!

Being able to reach and play with her toes is a HUGE step in development, believe it or not!

Just playin' and chillin'

We were unable to take Elsie to our neighborhood trunk or treat to show her off on Halloween, which was a little depressing because she looked so-dang-cute in her costume. Thank goodness for pictures so that you can see how adorable she and her sister were in their costumes!

 Evje was a pretty ballerina!

Seriously, getting this kid to hold still long enough to take a
picture can be a real chore!

Finally got a good smile!!


Dancing like a ballerina!

 And here's our little Elsie, dressed as a "Speckticled" Owl, costume designed to compliment Elsie's glasses. I thought it fit her personality just perfectly :)


Friday, October 11, 2013

Chicken Pot Pie

Ahh, chicken pot pie. My old friend. It's been a while since I have eaten you. Nine months and seven days since I have eaten you, to be exact. Yep, I made a chicken pot pie for dinner on the night that Elsie was born. And needless to say, I haven't really felt like making it again since that night.

I only recently discovered chicken pot pie a year or two ago. I was not very familiar with it growing up, and thought that it was only something that old people bought in the freezer section of the grocery store. When I found this recipe from the Pioneer Woman, I gave it a try and loved it, as did my family. I found out about its savory goodness, the rich gravy mixing perfectly with the chicken and vegetables, and to top it all off, a flaky pie crust. Yum. What's not to like? I often made a batch of the filling and would freeze half of it to make another pie on a later day.

Now, I'm not saying that the chicken pot pie on January 4 caused me to go into pre-term labor. Of course not. And it didn't exactly make me sick, but just the thought of it afterwards made me kinda queasy. It just sounded unappetizing. Somewhat revolting. Almost disgusting. Which is sad, because we used to love chicken pot pie. But I just couldn't bring myself to make it for dinner, until just a few nights ago.

That's right, I faced my fear. I found the courage to make the dreaded chicken pot pie. For the first time in nine months, I found my mouth watering just a bit at the thought of it. And so, I made it. Cooked the veggies, added the chicken, made the gravy. Put the crust on top. And baked it. And then, we ate it.

I totally conquered that pie.

Burp.

G Tube Jammies

When your baby has a g tube, sometimes things come up, and I'm not just talking about puke. Things you wouldn't have thought of before, like how pajamas with zippers won't really work during night time feedings. Zippers don't allow the feeding tube anywhere to come out, except up at the top by your child's neck. And you don't want tubes to be close to your baby's neck, that's just asking for a strangulation to occur. Jammies with snaps are ideal, because you can snake the tube between the snaps with no problems, away from the baby's neck. So what do you do if you have jammies with zippers that you really really want to use? Solution: you get creative.


I have several of these sleep-sack-type fleece sleepers that I loved to use during the winter when Evje was a baby. She would wear some cotton pajamas underneath, and then I would zip her up into the fleece sleep sack, and voila, your worries about baby kicking off her blankets during a cold winter night are gone. But this concept wouldn't work very well with Elsie's feeding tube because the sleep sacks have zippers . . .

So I did some research online and found a tutorial for adding a pocket to pajamas or other clothes to allow access to the g tube. I tried following the tutorial, but when there aren't pictures for every single step, and I mean EVERY single step, then sometimes I get lost. What can I say, I'm a visual person. Or I'm just really slow. Anyhow, I tried to follow the tutorial, but didn't really understand a few of the steps in the middle, so mine didn't turn out exactly the way it was supposed to, but I'm happy with the results anyway. Ta da!



As you can see, I created a hole or a pocket that allows you to access the g tube port without having to undoing the zipper and undress your child. Then, in order to prevent small fingers from exploring the pocket or a cold breeze to blow through the hole, I made a pocket flap with a button to close the hole. This way, the feeding tube can still exit the jammies, but the hole is closed off. Don't worry, the button is securely reinforced so that it doesn't fall off and become Elsie's chew toy or choking hazard.

There are a few little things that I will do differently for my next attempt, but overall, I'm pretty happy with the way that they turned out and that I didn't ruin the sleep sack, as I am prone to do when I try to get creative. I predict some cozy nights in a warm sleep sack coming up!

Thursday, October 10, 2013

9/5 months




 I can't believe our little Elsie is nine months old!




Weighing in at 14 pounds, 6 ounces, she is almost on the weight chart for her actual age! We're pretty excited about that. She's still a bit on the short side, at 24.5 inches, but her height will catch up with her weight eventually.

Here's a few more pictures from the last month or so.

Typical morning scene, the girls in their chairs having breakfast.
Elsie's milk via tube, and Evje's chocolate milk via bottle.

Funny face Evje!

The following three pictures are examples of our adorable two year old being incapable of smiling normally for a picture. She cracks me up! And Elsie freezes when she sees the glowing orange light on the camera, so it's hard to get good shots of her, too. Ahh, my photogenic children! 

Sisters holding hands :)

Really? That's a smile??

Even better

And this last picture is after Elsie's first trip up in the canyon for a ward activity. We had a little campfire and roasted hot dogs and marshmallows. Halfway through the night, it occurred to me that it probably was not good for Elsie's lungs to be around the campfire smoke. I'm such a good mom! Not. Besides possibly damaging her delicate lungs, we had a fun time, and she was all tuckered out and ready for bed when we got home.

Thanks for the cute hat, Aunt Brenda!

We took Elsie on her first overnight trip last weekend. We drove to Logan so that Clayton could go to a football game with his brothers, while the girls and I hung out with his sister-in-law and a bunch of cousins. We had fun and Elsie did great. Then the following day, we went to a baby blessing for Elsie's cousin Makenna, and got to visit with lots of loved ones.

Coincidentally, our girls have been struck with another cold virus, plus an ear infection for Evje, plus flu shots. Needless to say, we've had a lot of sleepless nights, tissues, boogers, fevers, grumpy girls, and tired parents this week. Also needless to say, we've had a lot of stay-in-pajamas-all-day days and watch-movies-all-day-while-holding-grumpy-kids days. Good times!

Besides all of the nose-wiping, we're loving our sweet little Elsie. I love watching her face light up when she sees somebody smile at her. I love watching her learn new things and make little improvements with her development. I (usually) love watching Evje interact with Elsie, unless it involves several blankets and a pillow being piled on top of Elsie's face. Yes, that actually happened. I was less than thrilled.

Happy nine months, baby girl!

Tuesday, October 1, 2013

Breast milk

If you're at all squeamish or uncomfortable reading about breastfeeding, pumping, or breast milk, this post is not for you! Please keep in mind as you read that I am keenly aware that breastfeeding is a very sensitive and emotional topic for many women, and I will try my hardest not to offend or make anyone feel badly. Everyone is different, has different opinions and different experiences. I simply wish to share my experience in hopes that it might encourage or uplift others in similar situations.

After Elsie was born, and the nurse came into my recovery room with the breast pump for the first time, I was still kinda in shock with the whole situation but I followed her orders dutifully and started pumping. When I went to bed that night, she asked if I wanted her to come wake me up in the middle of the night so that I could pump. "Wake me up in the middle of the night to pump?? Is she crazy?" I thought to myself. "No no," I told the nurse, "I'll set an alarm on my phone. You don't need to come wake me." I chuckled to myself as she left, believing my lie, because who in their right mind would wake up in the middle of the night to pump? Certainly not me. I had just been through a nightmare of a premature delivery, and I wanted to sleep and forget the whole thing.

At least, that was what I tried to convince myself. But as I thought through it and faced reality, I realized that if I was going to be serious about pumping and trying to get my milk to come in to feed my baby, that I needed to be dedicated from this moment on. I would do what it takes, I would try my hardest.

So I woke up in the middle of the night, and I pumped. When the first little drops of colostrum appeared in the bottle, I was thrilled. I walked myself down the hall to the NICU and triumphantly handed the precious liquid to Elsie's nurse. This simple act of motherhood was sometimes the one and only thing that I could do for my baby. I couldn't hold her, I was nervous to touch her delicate skin, I was scared to even change her tiny diaper amid the tubes, cords, and monitors. But here was one very important thing that I, and only I could do for Elsie. It was empowering.

From that moment on, I was a full-time pumper of milk. Every three hours on the dot, I would hook up to my pump and milk away. It helped that Elsie was on a three-hour care schedule; that helped me remember and to focus on why I was doing what I was doing. Whether I was at home or at the hospital, Elsie received her feedings and I pumped at the same time: 8am, 11am, 2pm, 5pm, 8pm, 11pm, 2am, and 5am. After the first few days, I ditched the 2am pump because I can't function on three hour periods of sleep. I also scooted the 11pm pump a little closer to 10pm, so that I could go to bed a bit earlier.

I got pretty handy at multi-tasking while pumping. Evje got used to me walking around the house with the breast pump attached. Good thing she's so young and hopefully won't remember all of this, or else the poor thing might be scarred for life. I made breakfast while pumping, read bedtime stories while pumping, watched Evs take a bath while pumping. Watched lots of movies and read lots of books and surfed the internet lots and lots while pumping. Clayton gave me a Nook tablet on my 30th birthday, and that handy internet device provided hours of entertainment while pumping. Pumping milk became part of my routine, part of my life. I was happy and proud to deliver bags full of the plastic 2.5oz bottles to the NICU freezer.

But. Keep in mind what was going on with Elsie during the first few weeks of her life. She was so tiny and could only take a few milliliters of milk every three hours. Then she wasn't pooping, and they didn't know why, and feeding milk was suspended for a time until they figured out what was wrong. Once she was cleared to start milk again, they fed her very small amounts very slowly and cautiously until they were sure that her underdeveloped digestive system could handle it. In the meantime, I was pumping like crazy and milk was starting to pile up. Our shelf in the NICU freezer was full. Our freezer at home was full. Our deep freeze in the garage was starting to get full. And so, a tiny bit of depression crept into my mind. "Elsie is so small and so fragile," I thought to myself, "There's no way she's ever going to use up all of this milk. IF she even survives, that is. Why am I even still doing this? I could stop pumping right now and she'd have enough milk to last her for months and months, if she lives." I continued to pump, but did so resentfully.

Luckily, the resentment didn't last for very long. Elsie turned a corner and started to thrive. She was still small but was growing. She was still only being fed very small amounts, but it was increasing. I remember distinctly the first time that the NICU nurse practitioner called to let me know that they needed me to bring in more breast milk to put in their freezer. I couldn't have been more thrilled. Elsie needed my milk, and was growing stronger and bigger because of it. So I continued pumping.

Around April, I was starting to feel the same depression and hopelessness again. Several of my friends, cousins, and a sister-in-law were expecting babies at this time. I was supposed to be due at the end of April/beginning of May. My baby wasn't supposed to be born yet, but she was. I was supposed to be enjoying the last few weeks of an easy pregnancy, complaining in camaraderie with my fellow pregnant buddies, but I wasn't. Their babies started coming, and I felt small twinges of sadness.

Then my dear sister-in-law gave birth to her sweet baby girl, and I suddenly felt no anger or jealousy, only happiness that baby Annabeth had arrived safely, and that both she and my sis-in-law were healthy and well. I was so thankful that they hadn't had to go through a terrifying NICU experience. I was glad that if anyone had to go through the NICU, that I had to do it instead of them. It's not something that you would wish on anybody, and I was so happy that their little baby was full-term and healthy. The depression was gone.

Fast forward to a week or two after baby Annabeth was born. Due to some extenuating circumstances, Annabeth's mama was unable to produce enough milk for her hungry baby. She wasn't gaining weight. Of course they knew about my overflowing freezer problem, and thus began a very happy arrangement of sharing the frozen milk with my sweet new baby niece. I was thrilled to have a new reason to pump with renewed vigor and enthusiasm. It seems kinda silly that my own baby wasn't reason enough for me to want to pump, but I'm serious, the frozen milk would have lasted until her 8th birthday by the rate we were going through it. I know that it was a very hard and probably very humbling thing for Annabeth's mama to admit that she couldn't feed her baby enough and to ask for help. I'm so very glad that she did. Annabeth is a strong, active, and healthy baby now, and reminds us so much of when Evje was a baby that we joke about what I put into her milk. Yes, Annabeth would probably be just as healthy and happy if she were only fed formula, but I can't but feel happy when I see her and know that I have helped her grow in a small way. I like to call her "my little milk baby."

As Elsie grew and it got closer to her due date, I was anticipating being able to teach her how to breast feed so that I could stop pumping. How much easier it would be to simply put my child to my breast to feed, instead of having to pump, wash bottles and equipment and so forth. I couldn't wait. We had one or two successful attempts, but she never got very good at it. She had a lot of anxiety with feeding by mouth, and despite all of the help of the lactation consultants, we tried and tried with very little success. At last, four weeks after her due date, we decided to have the g tube placed. Everyone told me that Elsie would get the hang of feedings as soon as we got her home and she got used to me being her full-time feeder and caretaker. She would get over her anxieties and would pick up breastfeeding. The g tube would be a very temporary solution.

Aaand here we are, nearly four months after Elsie's discharge. If you've been following our blog, you know that Elsie developed a severe gagging problem and stopped all feeds by mouth shortly after she came home. The g tube was her only source of nutrition. Now, we are still working with our awesome feeding therapist Helene, and making progress towards Elsie someday being able to have her g tube removed. But in the meantime, I'm still pumping. I dropped the 5am pump after Elsie came home, and adjusted my pumping schedule to her new eating schedule, which is every four hours during the day. I pump at 8am, 12pm, 4pm, and 8pm. Sometimes if my supply is dropping, I'll add an additional pumping session at 10pm.

I have been blessed to have enough milk for Elsie as she grows and her feedings increase, and still be able to freeze milk for Annabeth. Elsie receives milk through her feeding tube from 10pm to 6am, in addition to her four daytime feedings, which requires a large amount of milk. I never thought in a million years that I'd be pumping for nearly 9 months and still going strong. But it's second nature to me now, and I don't resent doing it. It is recommended that Elsie receive breast milk or formula until she reaches the corrected age of 1 year, which will be the beginning of May 2014. That is my ultimate goal, being able to pump until then, but you never know, I might keep going after that. I have been blessed with sufficient milk for my own baby and to supplement another baby, and I say that it is a blessing because there are so many women who struggle with their milk supply, especially when exclusively pumping. Especially when your baby is born early, and your body is tired and traumatized and stressed out. I consider it a huge blessing that I have been able to be so successful producing milk. I'm not trying to toot my own horn, or brag about my accomplishments, but simply want to share my pumping experience with you. Like I said in the beginning of this verrry long post, I am writing about this experience to provide encouragement for others. If there is something difficult in your life, you can do it. You can get through your trials and hard times if you find the determination and a good reason to keep on trying. I am proud to say that I pump breast milk for my baby and I know that it is giving her the best possible nutrition for her growing body to grow and to heal.

My two little milk babies

October 1

Ready for some updates? We've been busy during the last few weeks with various doctor appointments and therapy appointments and family activities. Here's what's been going on:


  • Elsie had an evaluation with a craniofacial doctor to see if Elsie would need helmet therapy to correct her flat head. The appointment literally took less than two minutes, and she doesn't need a helmet. Thank goodness! Her head is improving and should continue to round out as her muscles get stronger.
  • Elsie had her first appointment with the Neonatal Follow-up Clinic. This is a medical clinic with the State of Utah Health Department. Basically, they will follow Elsie for the first few years of her life to track her progress, provide us with support and resources as needed to help Elsie succeed, and also to share her medical data with the Neonatal community for research purposes. During each appointment, Elsie will be seen by several different providers in various medical fields. For example, during our appointment last week, Elsie was examined by a nurse-practitioner, we spoke with a nutritionist, worked with a physical therapist, and spoke with a neurologist. The appointments went well. Developmentally, she's a little behind on a few things with her motor skills. We received lots of helpful information and I was glad to find out what we need to work on with Elsie. There is still also concern that Elsie could develop Cerebral Palsy, as a result of her brain bleeds. But that is something that can't officially be diagnosed until 18 months or so, and until then, we'll keep working with Elsie and helping her to learn and grow. She has overcome so much in her short life, and no matter what the future brings, we love our little miracle baby.
  • Feeding therapy is still going really well. We've shifted focus from getting Elsie to take a bottle, and have instead introduced her to drinking from a cup. We take a very small soft plastic cup like a medicine cup, and mix some milk with a small amount of pureed food to make a thickened liquid. We don't want to have her drink thin liquids from a cup just yet, not until she's better at it. Thin liquids could cause her to choke and that could be detrimental to her learning. Thickened liquids are slower to collect in her mouth and therefore easier to swallow while she is learning. So far, she's done pretty good with it and seems to enjoy it. We are also still working on spoon-feeding purees, which she also enjoys. She thinks it's great fun to blow bubbles while eating, which means that most of the food ends up on the bib or all over her face, but she's enjoying herself while eating, and that's important. She doesn't eat large amounts by mouth, neither with the cup nor with the spoon. She'll take maybe a teaspoon or two. But again, she's enjoying herself and learning to eat by mouth and is mostly successful. Her gagging while eating has decreased a lot. We're really happy with her progress.
  • We finally got an appointment set up with Early Intervention. They were supposed to contact us after Elsie was discharged from the NICU, but for whatever reason, that never happened. I called them a few weeks ago and we are scheduled for an evaluation next week. They'll come to us and work with Elsie in our home, giving us ideas of what we need to work on with her and how we can help her to achieve her potential.
  • During the last few weeks, we've been able to take Elsie with us on different family activities out and about. It's fun to take her with us and we love being a complete family. But . . . cold and flu season is quickly approaching, and we're going to again have to take precautions to keep Elsie safe. She will qualify for special shots called Synagis that will help protect her from the dangerous RSV virus, but she can still catch the virus, which has the potential to put her back in the hospital. Therefore, once the winter sicknesses start up, we'll go back to keeping Elsie at home as much as possible and limit her exposure to small children. We ask that not only for Elsie's sake, but also for everybody else--nobody wants to get sick--if you are not feeling well or have been exposed to someone who is sick, please stay home until you are feeling better. The following sign will be hung up in our home to remind everyone to keep the germs away.

Tuesday, September 17, 2013

I remember

Looking back, baby, I remember. I remember that night and I remember those five months in the hospital. Some memories sweet, and some memories I long to forget, but know that they are a part of who we are now.

I remember being confused. Why hadn't the doctors stopped my labor by now? This wasn't what was supposed to be happening. It was too early for the baby to come. Surely they realized that. Didn't they?

I remember being in agony. The pain of the contractions while being strapped onto the gurney and unable to move my body into a more comfortable position. Feeling my water break on the helicopter and knowing that  we were past the point of no return. This baby was coming tonight, whether or not it was too early. The agony of pushing my tiny baby out of my body, while desperately wanting to keep her safely inside.

I remember being in denial. This sort of thing could never happen to me. I was young, healthy, ordinary. This sort of thing only happens to people who . . . and I couldn't finish the sentence. I didn't know what kind of people this happened to, but certainly, it didn't happen to me. The NICU nurse, offering me a tiny, 3-inch-square diaper to take home with me, and I wanted to throw it across the room and never look at it again. I didn't want that reminder of just how small and fragile my baby was. My baby, who my body had unkindly evicted just a few hours ago. She should still be inside my womb. I didn't want to see her. I didn't want to see how damaged and delicate and close to death she was. I wanted to pretend that none of this had happened and that I could go home and finish the last four months of pregnancy in peace.

I remember crying. A lot.

I remember holding you for the first time. I was worried how you would handle the stress of being moved and handled. But I was eager and wanting to hold you. You were so so tiny. I remember how it felt to feel your skin next to mine. It was a special moment that I will always treasure.

I remember sitting at your bedside for hours. Not reading a book, not surfing the internet. Occasionally sending an update to a loved one by phone call or text message. Just sitting, watching you sleep, willing you to grow and to heal.

I remember waiting. Watching other babies move on and progress and go home while we remained. Waiting for milestones, which were slowly but surely reached. Waiting for test results, for ultrasound results, for surgeries. Waiting for healing to happen.

I remember feeling grateful. Grateful for help and love and support and blessings. Grateful for strengthened relationships. Grateful for little things that helped us along our journey. Grateful that things could have gone a lot worse, but didn't. Grateful for miracles.



Monday, September 9, 2013

8/4 months

I can't believe that our little Elsie is eight months old. Of course, developmentally, she is four months old. Either way, the time has gone by so quickly. There haven't been many changes in the last month, but here is what has been going on:


  • Elsie's PEG g-tube was replaced with a button g-tube. All that this means is that instead of the tube coming out of her stomach with 6 inches of tube outside of her, now there is only a flat button that lays flush with her skin. They place the PEG tube initially and let the skin around the incision heal, and then take the PEG out and replace it with the button. It's like when you get your ears pierced. Initially, you only wear the studs, keeping them in all the time for eight weeks, and you twist the studs periodically so that the skin around the hole can heal. After the hole has healed, then you take the studs out and wear whatever earrings you want. Not sure if this analogy makes sense to you, but it does to me. Anyway, we went to PCMC for the procedure, it was very quick once we finally got in. Elsie only needed minimal sedation, no intubating or anything invasive like that. She did great with her oxygen while being sedated, and after she woke up, I took her home. She was sore and a little cranky for the rest of the day, but was fine after that. The button is a lot less noticeable then the PEG and there is less for Elsie to grab and pull on. The set up for her feedings is pretty similar.
  • Still working with our awesome feeding therapist. Elsie is still struggling with the bottle, and hasn't been able to have the same success as she did that one time. Not sure why she was able to rock the bottle that time and not sure why she can't do it now. She gets pretty annoyed when we try to do the cheek support. Instead, we place the bottle in her mouth and let her gum and chew on it. She doesn't suck on it much, but as Helene told me, how much longer in her life would she be sucking on a bottle anyway? Maybe six months. Sucking on a bottle is not a necessary lifetime skill, and so if she never gets the hang of it, then so be it. The good thing is that even though she cannot suck, she CAN swallow and eat food from a spoon. So we're still working on the spoon-feedings, and Elsie's gagging is decreasing day by day.
  • Speaking of eating, our little fatty is up to 13 pounds, 5 oz! She is not on the growth charts for her actual age (8 mo), but if we were going by her adjusted age (4 mo), then she would be in the 25% for weight and the 35% for height. Everyone always marvels at her chubbiness and her fat rolls. 
  • Elsie can *almost* roll over from her back to her tummy. She's so close. Her darn shoulders just get in the way. I wouldn't be surprised if she gets it in the next week or so. She doesn't enjoy tummy time for more than a few minutes, so she better hurry and learn how to roll from her tummy to her back.
  • She's great at tracking things with her eyes. She can follow conversations really well with her eyes, which bodes really well for her cognitive skills. Helene and I were laughing the other day while we were chatting because Elsie was watching the both of us as we talked like it was a tennis match: look at Helene while she talks, then turn and look at Mommy while she talks, and over and over.
  • Elsie's new skill that she learned this last week is to blow raspberries with her tongue out. Again, therapist Helene tells me that this bodes well for her cognition. Apparently, it takes quite a lot of coordination to make this funny noise. Way to go, Elsie!
  • She still doesn't cry or talk very loudly, but she is definitely talking a lot more often. I love listening to her little voice when she's chatting to herself, it's so cute.
  • She still loves to suck on her fist and occasionally some fingers. Even when she gags herself, she keeps on trying to suck. Such determination. I'm always amazed at my resilient little girl.
  • We got the go-ahead from the pediatrician today to arrange for the oxygen company to come pick up the oxygen tanks and machines that have been hanging out at our house unused for the last several weeks just in case Elsie needed some additional oxygen. Hooray to get rid of the oxygen hopefully for good!
  • We've brought Elsie out among some pretty big crowds lately, first to church for an hour last week, and then to Clayton's grandmother's viewing and funeral this last weekend, as well as a mission farewell for Clayton's cousin Alicia. Yeah, it makes me kinda nervous to have her around so many people with the potential for germs all around. But I figure that RSV season will be here soon and we may as well get out with Elsie now while we can. Once winter illnesses start coming into season, we'll go back into our protective bubble and keep her at home. It was kinda fun to bring her out around Clayton's extended family; Elsie is sort of like a celebrity. She enters the room and everyone rushes over to see her. Everyone wants to see our special miracle baby :)

Bumbo chair

Snuggling with Uncle Justin

At PCMC before her gtube replacement

These are the cute jammies/scrubs that the hospital provided for her to wear
during the procedure. Such a cutie.

video

Here's a little video of little miss chatty as she blows with her tongue and plays with her burp cloth. We love this little sweetie! Happy eight months!

Friday, August 30, 2013

Memories

I had a rough day on Wednesday; my patience and my temper were fighting to see which one had more control. A certain two-year-old who lives with me was driving me bonkers. I'm sad to say, my temper won most of the battles. I know everyone has crappy days sometimes, and I should just move on and try to be better instead of wallowing in my guilt. But she's only two. Yes, a very intelligent two, but only two, regardless, and maybe sometimes I forget that important little fact.

I've been reflecting today on motherhood and how I treat my children versus how I should be treating my children. To me, becoming a mother was an amazing gift that, at one point, I didn't think that I would ever receive. It took us three very long and heartbreaking years before Evje was conceived. I won't bore you with all of those details, but suffice it to say that when I finally became pregnant, it was a big surprise. We were so excited and so thrilled to finally become parents after such a long wait. Throughout my pregnancy, I rejoiced in every precious kick & bump that I felt. And when Evje was born, I promised myself that I would try my hardest to not be a "complaining parent", you know what I'm talking about; those parents who whine to others about their kids more often than not. The ones who jokingly say to a childless couple as they drag their screaming child out of the room, "You want a kid? Here you go, take mine, ha ha ha." I hated it when people would say things like that to me. I wanted to shake them and tell them that even when their child is screaming and doing other embarrassing things, it is their child, a precious gift from God, and they should be grateful for every moment with that child because not everybody gets to experience parenthood.

And here we are, nearly two years and a half years later, and every once in a while, I find myself being a complaining parent, or letting my temper get the better of me when Evje is being naughty. When I realize what I'm doing, I feel ashamed that I have forgotten. Forgotten the longing to become pregnant, forgotten the joy of holding our precious new baby for the first time, forgotten the love that swells my heart when she does something amazing.

In order to not forget, I want to write down some of my memories of the last few months since we have brought Elsie home from the hospital. Most of them are small and trivial, but I don't want to forget these precious moments with my precious children.


  • Evje, finding every possible "blanket" that she can, covering Elsie with burp cloths, towels, rags, and doll blankets.
  • Feeding baby food to Elsie while Evje sits next to me, who dips her finger into the baby food and shoves it into Elsie's mouth.
  • Elsie waking up every morning with a smile on her face.
  • Evje shoving a baby bottle into Elsie's belly button and exclaiming that she is feeding Elsie!
  • Laying in bed on a Saturday morning and laughing so hard with Clayton because Elsie is "passing gas" so loudly. Man, that girl can toot!
  • Evje holding a spray nozzle (the kind that attaches to your garden hose and you squeeze the handle to make the water come out) up to her belly button and exclaiming that she is pumping like mommy! 
  • Evje asking over and over and over for "chocolate milk in a baby bottle, little bit warm." That is her breakfast of choice these days, as well as a mid-afternoon snack. She'd drink it all day long if I let her.
  • Evje always wanting to lay down with Elsie on the bed. I think this one has to do with Evs' obsession with blankets, but she loves loves loves to lay on the bed with her sister.
  • Evje talking to Elsie in a sweet, high-pitched, baby talk voice.
  • Constant battles with Evs on whether Elsie is allowed to sit in the green bouncy chair, or if Evje has currently claimed that one for herself and insists on Elsie sitting in the blue bouncy chair. Thank goodness that we have two bouncy chairs for the times that big sister is feeling selfish. 
  • Elsie sitting in the coveted green bouncy chair, and Evje squatting in front of her, talking in her baby talk voice, and Elsie laughing and smiling so much.
  • Going for walks with the stroller, and Evje jumping out of the stroller so that she can run back, pull back the cover on Elsie's seat and talk to her.
  • Elsie, who has been poked and prodded and examined for the first five months of her life in a somewhat unpleasant hospital setting, not only endures being poked and prodded by her big sister, but manages to laugh and smile while she does so.
  • Finding "flowers" with Elsie in her Moses basket that Evs has picked in the backyard and so generously shared with her sister.
  • Trying to encourage Elsie to drink from a bottle, while Evje is on the floor throwing a tantrum because I've told her that she needs to wait to take a bath until I'm done with Elsie, and Elsie then gags on the bottle and throws up all of the bananas that I just tried so hard to get her to swallow.
  • Evje wanting to dance with Elsie, and after I've explained for the billionth time that Elsie can't stand up to dance yet, Evje is satisfied with holding Elsie's hands while she dances herself.
  • While Elsie is laying on the floor on top of a blanket, Evje insisting on "wrapping up" Elsie, and proceeding to wrap Elsie up like a burrito, even though I've told her again and again not to cover up Elsie's face. I tell you, this girl has got a thing for blankets.
  • Showing Evje Elsie's scar on her back from her PDA ligation, and Evje leaning forward to kiss it better.
  • Me and Elsie sitting on the front porch, giggling and watching Evje run around the yard, carrying a stick, saying, "Goodbye, my daughters. See you soon, my daughters." Over and over and over. Don't ask where she got that from, we have no idea. 


Those are just a few of my special memories with my sweet girls. I love these children so much, even when we have rough days. I need to remember to treat them like the precious gifts from God that they are. Even when they are both crying and I want to give up, when my patience is running thin, when I am weary of the demands of motherhood, I will always love them and I don't want to forget these precious memories.


Thursday, August 22, 2013

Feeding therapy successes

We had our third appointment today with the feeding therapist, and can I just say how much I love going there? A, I'm happy that we're getting help with Elsie's feeding issues. B, I love the therapists there. Ok, I've only met two of them, but they are awesome and I really like working with them. And C, each time we go there, Elsie does something amazing! Or at least, the therapists acknowledge that she is making amazing progress. I don't have much to compare Elsie's eating problems with, besides her 2 year old sister. I'm not familiar with any other infants with similar problems. But the therapists here see a myriad of infants and children each day, and so when they tell me that Elsie is doing amazing and that they are astonished by her progress, that makes me happy.

I've had a few people in our family talk to me recently that were surprised and unaware of Elsie's eating problems, so in case any one else is confused, at this point Elsie does not eat anything by mouth. She has not done so since the beginning of July. She receives all of her meals through her feeding tube. Her gag reflex is very strong and very far forward in her mouth, so whenever she attempted to suck via bottle or breast, the sucking would cause her to gag and sometimes vomit. During the last two weeks at home, we've been working with Elsie on being happy with things in her mouth, and reminding her that eating can be pleasant. In addition to rubbing her gums and playing little games with her tongue, I've been feeding her small amounts of banana or pear puree by dipping a pacifier or bottle nipple into the fruit and placing it on the tip of her tongue. Her gagging and vomiting has decreased quite a bit. She's still got a long ways to go, but she is improving. We attempted to breastfeed once after her last therapy appointment, but she gagged pretty quickly and I haven't tried it since. Too chicken, I guess.

At today's appointment, therapist Helene gave us some pointers on bottle feeding, and we practiced while we were there. Elsie needs "cheek support", which is gently squeezing her cheeks towards her mouth so that her little lips form a nice pucker. You see, it has been so long since Elsie has successfully drank from a bottle that she doesn't remember how to do it. She is re-learning how to eat with her mouth. When we gave her the cheek support, her lips puckered around the nipple like it is supposed to, and after a few moments, she began slowly sucking. She was very hesitant and very apprehensive, and kept looking to me and the therapist for reassurances, but she was drinking from a bottle without gagging. I was astonished. So was Helene. One of the goals that we established for Elsie's feeding therapy on our first appointment was that Elsie would someday be able to drink 5 milliliters of milk, either by breast or bottle. 5 mls. is not very much. It is a very small amount, but that was our hope, that she would someday be able to drink that small amount. Today during therapy, Elsie drank almost 15 mls. and didn't gag once. I'd say that's nothing short of a miracle. Yes, it took her a lot of time and a lot of support to do so, but she did it. We were thrilled!

Then we got greedy and after giving Elsie a break to rest and reorganize herself, starting spoon-feeding her some banana puree. She did awesome again until the end of our session, and then she got tired and gagged and puked up all the bananas. Ha ha, oopsies.

Even with the gagging and vomiting at the end, we were still thrilled with her progress. Helene said that most babies who had severe gagging issues like Elsie would show an aversion to the bottle, meaning they would see the bottle and start screaming and not let it anywhere near their mouth. Elsie's ability to keep trying to eat, despite the fear and pain of having gagged repeatedly on the bottle, shows her extreme resilience and determination.

Our homework for the next two weeks is to do two spoon-feedings with the puree per day, and at least one bottle feeding per day. Not that she'll be drinking an entire bottle during these feedings, not yet anyway, but we are practicing bottle-feeding and hope to increase the amount that she can tolerate. Someday she'll be able to drink an entire bottle, and that will be a noteworthy day :)

"See my tongue?"

We so love our happy baby!