Journey to Parenthood

I want to be purposeful about journaling during this time in our lives as we watch our miracle micro preemie, Asher, continue to grow and thrive. I began this blog during my month of bed rest at the hospital while I was pregnant with Asher and his brother Titus. We continue to hope and trust the Lord for Asher's future. This blog begins with the story of how both of our boys came to be. They came about after many tears, many prayers, and many months of crushed hopes. On February 2, 2012, our boys Titus Bauer and Asher Mark were born at just 23 weeks and 2 days gestation. My water around Titus broke at 19 weeks, so his lungs were very underdeveloped. Titus lived 45 minutes and is now living a perfect life in heaven as he watches over his little brother Asher. Two and a half years later God redeemed our story of hurt with a precious full term baby brother for Asher. We are humbled by how the Lord has loved on us in our journey through parenthood.

Wednesday, February 12, 2014

Meet My Friend, the Throw Up Cup: Feeding Tube Awareness Week!

My pants are splattered with food, and so is my floor. My toddler has had a few outfit changes and one bath today to remove caked food from his hair. Sounds pretty typical? Maybe it is. But those are the results of a battle today on the feeding front. And lately, Asher has been putting up a stubborn, preemie-sized fight with a little toddler attitude on the side. And thankfully today, my friend the throw up cup, was not needed. But I'll get to that later…first, how we got here.

Asher got his g-tube when he was 2 months corrected (6 actual). He came home front he NICU with an NG tube (tube that goes in the nose down to belly) to help with his bottles he didn't finish. We fully expected his eating to pick up after being in the more comfortable environment of home. It didn't. He had reflux, and the discomfort of a tube down his throat. And he was trying to learn to eat. Not ideal. So, 1 1/2 months after coming home, he was back in the hospital getting prepared for g-button surgery (a feeding tube). It was one of the hardest procedures to watch him go through because now he really was our baby. Bryan and I were 100% in charge of him for the first time in his life. And so, it was different than any procedure in the NICU. All I could think about was how he should be playing at home, living an easy baby life. I just wanted to hold him in the way I knew would comfort him but I couldn't because of the tubes, iv, and wires. It was awful to see him crying in pain, and hooked up to way too many things laying and in a hospital bed- again. But, we got over that awful weekend, and eventually got used to his g-button and began to be very thankful for it. 

After g-button surgery 

He was 100% fed by the g-button for about the next 9 months. He fluctuated during that time with what he ate by mouth but it was never really enough to count. At about 12 months corrected (16 actual), we tried something new and he started eating more and more purees. Over a month he increased his intake so that he didn't need formula any more! It was amazing to see! So, since then, (he's currently 20 months corrected, 2 years actual) he's been consistently eating enough puree by mouth and getting just whole milk and water through his tube. He's never been crazy about drinking. At the same time, he's experimented with table food just about every day. But he's not consistent with it. At one point, he was getting half of his calories from table food! But then he got a cold, and so there went that. Extra mucous in the throat just doesn't go with sensitive gag reflexes and feeding issues. 

Eating the table, not food. Non food items are always more appealing! (About 9mo corrected here.) He was only eating a few bites a day by mouth-maybe.

Getting some milk on a walk (about 14mo corrected here). We would often finish the milk part of the meal on a walk when the weather was nice. This helped him to digest and would help avoid a throw up. If we let him get up and run around right after eating, it often ended in him throwing up the entire meal. 

Life with feeding issues is a BIG roller coaster. I know I've said that before.  Except on this roller coaster there is no track where you can see what curve, drop, or hill is coming next. It's a blind roller coaster, completely unpredictable. There is no chance to close your eyes as the stomach-churning downhill drop approaches. This has been our life the last 15 1/2 months. Really high high's and really low low's. It can be exhausting! Currently, Asher is fighting the "system" he has accepted so well for 8 months. He is no longer fully cooperating with eating purees. It takes a lot of work to get those bites in, and we haven't been able to get it all in. He's also not willing to try many table foods to take the place of the calories of the puree. So, this is a challenging time. We are working on a plan. We like that he is asserting himself, and his opinion about eating purees (I wouldn't like it either), but he has to also figure out how much to eat to take their place and sustain himself so he can keep growing and thriving. That's our ultimate goal! That he would understand how to be in charge of his hunger. For now, we are taking each day, one feeding at a time, praying a lot, getting messy with him exploring food and hoping for the best. And in the end, we can always give him more in his tube if he needs it. We can actually put thin purees through the tube if we need to, which is a blessing. But it is also hard to do. Because it feels like a big step back if we go from him eating all of that by mouth to put some of it in his tube. That was one of his BIGGEST accomplishments in feeding to go from eating about 4oz a day of puree to almost 20oz in one month! We also wonder if it is time to not "make up" those calories he won't eat by giving him more through the tube. We wonder if it's time to see if our little birdie can fly on his own. Oh how we yearn to see that. God knows the timing. We wait and we hope. And it could all change by tomorrow or next week. The roller coaster. It doesn't stay in the same place very long.

This is after eating some table food and feeding himself pudding! Yum! Little victories.

We use a "reward" system for puree bites. So we offer a toy, or anything interesting, and he knows he has to take a bite to get that. It's not the perfect, ideal way of eating. But it gets the calories in, and in by mouth. And for table food, he is totally in charge of what he eats and we don't use the system for that. We just do that for puree because it has his main nutrition in it. It's often a mixture of grains, fruits, vegetables, sometimes meat, and we add oil to it so it has some good fat in it as well. The hope is that eventually, he will be totally in charge of his intake and not need a "reward".

A milk carton for a bite…we have to get really creative these days. I'll give him just about anything for a bite. We once gave him a roll of scotch tape when we were eating at a restaurant. I'm sure people thought that was not a good idea! He made a mess, pulled that tape all the way out, BUT he took bites! So, everyone wins. :)

This is how we use the tube in a meal, for giving him whole milk. The syringe is resting on the foot rest of the chair. We just slowly push it in over the course of the meal. Isn't he sweet? He hadn't realized yet that his seat belt was off, or that would have been a blurry picture of a toddler making a run for it! 
PS. That milk has a vitamin mixed in with it--that is why it doesn't' look white! 

Close-up…the monkey behind the button is just a pad used to absorb any leakage when unplugging the tube. Constant wetness on that area would result in irritated skin and possible granulation tissue which is really no fun. These pads have worked well for us! Sometimes people ask if the tube hurts him. It does not. It's just a normal part of his body now. It can get bumped, moved, tugged on and it won't hurt or come out. He has never really seemed to care that much about it. 

So, here is my friend I mentioned. This is one of my best friends actually. A throw-up cup. Throw up is usually a part of a tubie's life.

There is a cup always near by in our house. I keep some in the car.  I keep one in my diaper bag for appointments and especially for when we go out to eat. I even invested in these nifty collapsible ones for outings so it wasn't so bulky in my bag. That's how important it is! With many tubies (tube fed kids), throwing up is common. Not all have this issue, but many do. From talking to moms and doctors the consensus for why seems to be that it's just part of being tube fed, and not fully choosing when you want to eat/drink. And also part of having a sensitive gag reflex…we can just thank extreme prematurity for that one. So, Asher will often throw up what he's eaten by mouth, just because he gagged on some food, or even on a bite of puree or because he has the hiccups. We deal with throw up sometimes once a week. Sometimes it's several times a week, and on bad days, 2 times a day or more. We have become experts at knowing when he's about to throw up, and we can grab a cup and have it at his mouth with cat-like speed! That saves us both from dealing with a big mess. We have picked him up out of bed several times after he's thrown up and is covered in it. It is, hands down, my least favorite part of dealing with a g-button and feeding issues. And that's not because it's gross. Although it surely is. It's because it means my child is having yet another bad experience with food to add to his foundation of not trusting food to be an enjoyable thing. And it means my child has lost precious, needed calories that we worked so hard to get in him.

But, despite the thousands of times he's thrown up, he keeps growing. He's about 24 1/2 lbs and the same size as many of his full term friends. And that's a blessing straight from the Lord! We are so thankful for weight gain! And we have his feeding tube (g-button) to thank for laying the foundation for that those first 9 months. And that's probably the most important thing to understand about tube fed kids. That tube is allowing them to grow. And that means their brain is growing, so they can learn and thrive and meet milestones like their peers. 

One of the hardest things about feeding issues and having a tube fed kid is relating to others who aren't going through that with their kids. I do have some feeding issue and tubie mom friends and that is a blessing to have them on the days where I know, "they just get it." I also have many friends who don't deal with this, but make a genuine effort to understand, and pray, and walk alongside us. They are an immense blessing. The hard part is talking with people outside these circles. I often struggle with knowing how much a person really wants to know when I'm asked questions. I love educating and teaching others about the tubie life. But it's also a mental and emotional investment to explain things about it. As I think it would be to explain any special needs your child has. 

Here are my top 4 things I would NOT recommend asking or saying to a mother of a child with a feeding issue or feeding tube:

1. When will he/she get the feeding tube out? 

This is #1 on this list for a reason! This is the golden question I would love to know the answer to myself! Most of the time the tube is not in by choice, and so it's up the the child, when they decide they want to eat/drink. Sometimes, it's a medical issue and that is up to doctors. But, often, it's a painful waiting game. To me, asking this question just piles on to the many times I've asked and hoped for that answer myself. 

2. Will he/she struggle with eating his/her whole life?

Again, we hope not. We don't know. This is just not a productive, sensitive question…no matter how well meaning. 

3. My kid is a picky eater too. It's just how toddlers are. 

It's just not the same with tube fed kids. Kids with tubes and feeding issues may be toddlers, and that may play a role. But it just can't be compared to a child who knows how to regulate their eating/drinking on their own and who is growing at a normal, healthy rate because of it. Many tube fed kids missed out on learning how to recognize, and regulate their hunger as young babies. So, they are having to learn about that in a different, unnatural way. 

4. Giving advice. 

This is a very tricky area. I would say proceed with caution on this one. As in, don't go there if you can help it. It would be like me giving advice to a lion tamer. I just don't know anything about that except what I've read or seen, which is nothing like the real experience, I'm sure.  (And, let's be honest, I really haven't read or seen much on that!!) 

What do I recommend you say/ask to parents you know are dealing with a feeding tube or feeding issue and you are wanting to know more about it? Glad you asked! 

1. How is he/she doing? (Just in general, let the parent decide to go into feeding details.)

2. What is he/she working on in therapy?  

3. How is eating/drinking going this week? 

4. How can I pray for you and your child?

And lastly, I will just try to be very real.  I know I can be hard to approach on this topic. I know it's hard to ask questions about things you aren't familiar with. It's difficult for the asker to know what to say and for the receiver to know how to respond on sensitive topics. It's hard for me to not react too defensively sometimes or too sensitively. It's part of the momma bear thing. And also, part of the continuos process of sorting out my heart on the matter. I know I am exactly the mother God planned for Asher. I know He will give my husband and I all we need to navigate Asher's feeding issues. But, there are many days I don't want this. There are many days I long for easy and normal in this area. I really will cry the day I can take Asher out to eat and he just eats something off the menu. And I don't have to pack syringes, milk, puree, spoons and a million tiny toys to distract him. This has been a continual, refining process of the Lord teaching me about His character, and how ultimately, He is better than having a child that's easy to feed. And I am a better servant of His because of it. He has given me a different perspective because of it.  I appreciate some things I never would have. And I am thankful for those things He's showed me! And I pray for grace from those around me as I navigate through the lessons God's teaching me in this area. I'm so thankful for my family and friends who give me grace constantly! 

I think the most important part of asking questions about a child with a tube, or a feeding issue is to have a genuine interest and be willing to listen. Being a parent who's dealing with this issue can be a very isolating thing. A lot of times we retreat rather than engage in some conversations because we assume no one will understand or has the time to try to. And it can be a very consuming thing. Similar to caring for a newborn. Life is all about eating at that age. It still feels like that to us a lot of the time! Our life still revolves around the high's and low's of feedings. I'm sure a lot of moms with kids who have special needs feel hesitant to share. So, it will bless the momma you're talking to if you show that you have time to listen, and ultimately that you care. Because most of the time, I do want to talk about it, and I do want to explain how things are going. Moms love to talk about their kids! I think that goes for any motherhood topic! I hope to apply that in conversations I find myself in about things I am not familiar with. How to ask with care, and to listen with care. 

Still with me? Thank you so much for that!! We'd LOVE prayers for Asher to LOVE eating one day. We want to throw a HUGE good-bye party to his g-button and to throwing up! We appreciate all of you who are cheering Asher on, and walking alongside us in this. Thank you. The preemie journey lasts far beyond walking out of the doors of the NICU. 

Asher says thank you for your prayers too! He says "mmm" now anytime he sees food or a drink. It's pretty darn cute! I can't wait to hear that more and more as he continues to explore and enjoy food. We thank the Lord every day for this beautiful, energetic, smart and silly little boy. 

Monday, February 3, 2014

Asher's 2nd Birthday... "I will turn the darkness into light before them, and make the rough places smooth." Isaiah 42:16

"And I will lead the blind in ways they have not known, along unfamiliar paths I will guide them. I will turn the darkness into light before them and make the rough places smooth." Isaiah 42:16

Darkness into light.

Rough places smooth. 

Those 2 lines summarize the last 2 years for us. Especially this last year…it has been such a refreshing year. Asher changed SO much in one year, and reached many milestones we weren't sure he would. It has been a healing year. 

This was a day we could not picture 2 years ago. Two years ago we could not picture this healthy, beautiful blonde boy running around while our friends and family watched and played with him. This is the Lord turning the darkness into light. Because the day Asher and his brother Titus were born was a dark day. A rough day. One of the most painful days of our lives to look back on. 

It was a day full of pain for me--physically. The emotional pain came later. I was getting shots all day to try to stop contractions. It was a medication that made my heart race, and made me shake. I had gotten it off and on the entire week before I gave birth, as well as one round of magnesium, which made me feel really awful! With a magnesium drip, your body feels like it's getting flushed with heat, magnesium  relaxes every muscle in your body in an attempt to calm your uterus as well. The first time I got it, it bought us almost a week. The 2nd time I got it was on the boy's birthday. Actually, probably just an hour or so before birth. It was quickly discovered that it was not working and I was in labor. I remember my doctor being there when they wheeled me out to emergency surgery and she told me twice, very firmly, to push. It took everything I had because I was in so much pain. I didn't have my eyes open because of the pain so I only remember what I heard.  Hearing her tell me to push was the last thing that I remember happening before I woke up to a different world. 

Titus was born first, vaginally, and then Asher was born via c-section. Because it was an emergency, I was completely under. I have no memory of either of my boys being born. Although that can be hard, I do think that's God's protection too. I never saw Titus alive, only Bryan did. The only baby I held the day I gave birth was my tiny Titus, who had already passed away.  I would not hold Asher for 5 more weeks. I was on so many pain meds. I don't remember anything about that night with clarity. I do remember knowing I was not "with it". That was something I had to mourn later, that I was so out of it that night and the next day. It really took several days for the drug cloud to lift. I saw Asher the next day, and I touched his arm and hand. I don't remember really processing what was going on. It was all too much--I'm sure a mixture of shock and pain meds. The next month we watched our baby suffer, but then over the next several months, we started to see him grow and heal. We felt the mighty hand of the Lord on him and all the many prayers said for him. Asher has come so, so far. Our hearts are full. He's a tough, funny little boy who is full of joy! 

And now, I can say that these 2 years while they had many slow moments, and many hard moments, really have gone fast! To be at his 2nd birthday is a deep sigh of relief-- we made it. We made it to 2. We can't fully put into words how thankful we are for all the Lord's done in Asher, and what He's taught us in having him as our son. We pray that the Lord continues to teach us more about His character through parenting Asher, and we also pray this next year will also be another amazing year for him!

His biggest goal would be to not need to his feeding tube and to eat more table food. He still gets whole milk and water through his g-button because he's not real interested in drinking. He is eating purees by mouth, and the table food he eats has been up and down. He's had weeks of eating really well as far as eating things we eat. And here lately, not so much. It is just part of the feeding issue roller coaster and the fact that he had to learn about eating in much different, slower way than most babies. And he has dealt with throwing up frequently for the last 15 1/2 months. His throwing up is a combination of having a really sensitive gag reflex and also not fully "choosing" when he is eating/drinking. (Because if it were up to him, he wouldn't!) It was really bad when he was young- like 4x a day. And when he was young, it was so painful on him. He would gag, turn red, and cry. It was not normal spit up. It was painful throw up, and it was so hard for us to watch.  Now it's more like 1-3x a week. We had one stretch of 1 month with no throw up from around after Thanksgiving to Christmas this past year, and it was amazing! It was also when he was eating a LOT of table food and I think that really helps.  A lot of times it happens when he gets hiccups, and then is running around or getting really rambunctious after eating, he will throw up what he ate. Even if it's been an hour since eating. It's one of THE MOST frustrating things to watch as a parent of a kid who hesitates to eat in the first place. It just doesn't make for a "good" experience with food. But enough about that. :) 

So our biggest prayer requests for the year would be no more throwing up, eating more table food, and drinking enough to get his g-button out! Just as his 2nd birthday was hard to picture 2 years ago, those prayer requests are hard to picture happening as well. But, we always remember where we got Asher's middle name. We named him Asher Mark because of the verse Mark 9:24, "I do believe, help my unbelief." So we believe and pray, Asher will love eating and drinking one day and not throw it up! One of my friends who deals with feeding issues too says we will throw our kids an " I Like to Eat Party!" when that happens. And we really will!! We are incredibly thankful for all the improvement he has made this year with eating. He went from being 100% tube fed with formula to only getting milk/water through the tube and eating the rest of his calories by mouth. He went from eating only about 0-3 ounces of puree a day to eating almost 20 ounces a day! He's been doing that consistently now for 8 months! 

We had a small party for Asher and it was perfect! He loved the attention, once he warmed up to it. He's so different than at his party last year! He was really little and just an 8mo old baby (developmentally). He wasn't even sitting on his own yet. So, this year he loved climbing on our friends, and running around and playing with his new toys! He played with his cupcake but would not taste any of it. I also gave him some pudding and he did lick that off his fingers, and he took a few bites by himself with his spoon like a big boy! It was a sweet time celebrating with friends and family. Thank you for reading. Thank you for caring. And thank you for your prayers! 

The Birthday Blessing…we love it! Look it up at 

Snickerdoodle cupcakes- YUM.

Party favor 

In Exodus 39:7, it talks about these stones of remembrance and they were made out of onyx, which is a black stone. So, this stone represents how the Lord took what was rough (how hard his first year was) and made it smooth as it says in Isaiah 42:16, and also it reminds us to think of all that God has done in Asher. It is an actual stone of remembrance. Joshua 4:20-24 is about the people of Israel wanting to remember what God did when they crossed the Jordan River…how he dried up the waters so they could cross safely. They got 12 stones to represent the 12 tribes and those were also stones of remembrance of what God had done. It talks about when the children ask their fathers what the stones mean, they can tell them about how mighty the hand of the Lord is. We feel the same about what God has done in Asher. He truly is Jehovah Rapha- the Lord who heals! 

These ladies…so thankful for how well they love on us and Asher. 

He loves to get on the level of cars and trucks and watch how they work. It's so cute! 



Singing Happy Birthday! At first he turned away like he was being shy, but then his true colors came out and he soaked in all the attention! (**Video won't play on a phone.)

Enjoying the "birthday" pudding! He even said "mmm!" Maybe next year he'll eat cake, we'll see!

Mama Gail and Dig Dig- we love them so much! 

Gammers and Papa - we are so blessed to have two sets of amazing grandparents! 

Uncle Clay

Aunt KK 

We took these pictures a few weeks before his birthday. It was so fun! Last year we had the hardest time because he couldn't sit up yet, so it was hard to get a good picture without showing whatever was propping him up. This year we couldn't get him to sit or be still at all! 

No sitting mom 

I had to compare some pictures from last year because it's just so fun to see! 

From 15 1/2 lbs to 24 1/2 lbs! 
And his clothes last year were are 3-6mo shirt, 3mo jeans, and 0-3mo for his shoes! 
This year 2T for the shirt, 12-18mo jeans, and size 5 shoes! We are so thankful for every ounce, every inch, and every pound. That is something we would have taken for granted if we had not had a 1lb 2oz baby! 

Here is the video I made for Asher's 2nd Birthday that shows him from birth to now! 
(In case you didn't catch it on Facebook.)
**Also, I think video can only be played on a computer.

"But you, O Lord, are a shield about me, my glory, and the lifter of my head. I cried aloud to the Lord, and he answered me from His holy hill."  Psalm 3:3-4