This is Holland, and I love it.

Welcome to Holland is a poem that my mom sent to me during our NICU stay. It was and still is perfect and always brings me up when it's been a rough day. All of our friends have "typical" children. They all gave birth, started nursing then went home. No special doctors appointments, no walking hospital hallways at 2am because they couldn't sleep. It didn't seem fair that I had done everything "right" during Mel's pregnancy and yet there we were stuck between those pastel colored, sterile walls. So here is the poem, I pray that if you are currently or have in the past experienced a different than "normal" birth this will help bring peace to you!

Welcome to Holland
By: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

Yesterday my husband and I were talking. He said that someday he would like for Mel and I to take a trip to Paris. I have dreamt of going to Paris since I was young. Don't get me wrong I would still love to visit Paris but my new dream trip is to take Mel to Holland. To see the tulips and the windmills, to buy her a pair of wooden shoes.
Having Mel has changed me, everything about her coming into this world from her pregnancy, birth and up until now has shaped me into who I was always meant to be. And I thank God for her every single day.

Well now that I'm crying I'm going to go cuddle my sweet little tulip and say a prayer!

Love until another day,
Shelbi

How do you Dress a Tubie??

When Mel received her feeding tube at 1 month old we were still in the NICU and she had just recently started regulating her own body temperature and was FINALLY able to wear tiny little preemie clothes! When she came back from surgery with a feeding tube inserted in her belly one of my first thoughts was "How the heck do I dress her now!?"

I have figured out that different outfits and styles of clothes work better than others for different occasions and different days! This is what works best for us but of course something may work better for your child and that is great! I would love to know if you do anything different!!

Lazy at Home Days:

I am a stay at home mom with Mel and my husband also works from home. We get teased by family and friend that we hare home bodies and well... I don't deny it! We like to be home in our own environment and be comfy and when we are home I want Mel to be comfortable and be able to move! For days like this Mel is in a onesie! Onesies are perfect with her tube because she can't grab it and I can snap her extension in between the snaps at the bottom of the onesie! When we stay home I normally leave her extension hooked to her button so I just leave the onesie snapped around it! 

Doctor Appointment and Errand Days:

As  much as we love staying home Mel has a lot of doctors appointments and with me being a stay at home mom and my husband being home all day sometimes momma just has to get out!! On days like this I like to put on Mel's extension for her feed but then take it off when she is not eating. This minimizes the chance of her extension getting snagged and also is just one less thing to watch out for when getting in and out of shopping carts or the stroller! So for days like this I opt for an outfit with a separate shirt and bottoms, dresses or rompers. This way I don't have to totally undress her to remove to attach her extension and I can do it fairly quickly and inconspicuously. The only thing I don't like about this type of dress is that it is easy to catch her extension on things so I have to be super careful and if anyone else is going to hold her I have to remind them of her food tube or remove it. 

                       

Sleeping:

When Mel was smaller she slept in sleep sacks. We had a couple that zipped from top to bottom which were great because we could just run her food tube out the bottom of the sleep sack. We were given some ADORABLE fleece sleep sacks that were amazing but the only way to run her tube out was up near her neck and this momma was not about to make the suffocation risk even higher! So my amazing Grannie who sews put a large button hole at the bottom of the sleep sack on both sides at the seams. This was fantastic because we could run her food tube through one of the holes and also her Pulse Ox cord through one to her little foot! 

Mel no longer uses sleep sacks and now just sleeps in a onesie and has her favorite flamingo blanket.

                                                                                  

One of Mel's daily living room naps. With her favorite blanket of course!

                                                                        
                                                                              

Dress options that DON'T work well for us:

A onesie and pants. When a child is in a onesie with pants pulled up over them their tube is super hard to access and it is a struggle all together. We have done a onesie and shorts before and just ran the extension down through the leg of her shorts but it is a pain if you want to remove or reattach the extension! I actually saw a post from another tubie mom recently where she buttoned the onesie OVER her child's pants! Genius!!! This would be a good at home option!!

Just being naked. I have ton of friends and family members that just leave there children in a diaper and let them go. Which is great, its usually hot in Texas and if your child is a messy eater is cuts down on laundry greatly!! Unfortunately Mel is super curious about her button and has started pulling on it every chance she gets! (This makes bath time tricky!) also it would make me nervous since Mel is now crawling all over the place that she could snag her button on something and yank it out or injure herself! But if you like to leave your child unclothed and that works for you more power to you!!!!

Do you like to dress your tubie in anything different? Have you tried any adaptive clothing and fallen in love with it? I would love to know!!

So dress those tubies up, or don't you are the momma and you know best! but always make sure you kiss them goodnight and then go enjoy some wine. You deserve it!

Love until another day,
Shelbi

Specialist Appointments Stink

If your child is a tubie or has any type of medical condition that warrants frequent specialist visits i'm sure you are familiar with the anxiety from the moment the doctor walks into the room to the moment when he/she leaves.

The face we make when yet another doctor wants dang blood work!

In the past week Mel has had 3 Specialist appointments. At the beginning of every appointment they will do a round of vitals, and measurements. Height, weight and head circumference. As well as temperature, blood pressure and oxygen saturation.  Our first appointment was GI. If your child has a feeding tube then they are likely being followed by GI and you will see them between ever 2 to 6 months. We have seen our GI every 3 months since Mel got her tube at 1 month old. 

I went into this appointment super confident, I thought Mel was on a great track with her growth and development! Well that didn't last long because as soon as I sat her on the scale and she only weight 18 lbs 3 oz my heart sank. She lost 1 lb 2 oz in 2 months. If you are a preemie mom you understand my panic when I saw she has lost weight. One of the main things you pay attention to during a NICU stay is your little nuggets weight gain and even if you don't realize it at the time that gets ingrained into your mind and weight loss= bad. 

When we got back to the room waiting on the doctor to come in I was thinking to myself that that 1 pound was not all that bad, I mean she had just started crawling a month before and my child is ALWAYS moving!! So I figured I would tell the doctor that and he would simply agree with me. Well he came in, we talked about her current diet and we talked about her weight. I let him know that she was very very active and that I was not super concerned about her weight loss. He felt differently, He wanted a blood test. 

First of all we hate blood testes because of all the time Mel has spent in the hospital her already tiny veins are damaged and very hard to hit. Second I really didn't think that she had what he was testing her for since she had NO symptoms. But instead of using my mom intuition and telling him that I would like to wait to test her we went ahead and did the blood draw. (TIP: if your child has a feeding tube and is going to get blood drawn PUSH WATER!! as much at your child can handle. I recently started doing this and it helps SOOOOO much!!!) We just received these results and everything was NORMAL!! Yayyy!!!

So moral of this story, listen you that momma intuition because you know your child better that any doctor no matter how many credentials are after their name. And guess what people, doctors don't know everything. Yeah its true and if you are new to this life you are probably sitting there shaking you head and saying i'm a liar, but you will realize that they don't have all the answers and you are not obligated to always follow their direction. You are your child's advocate and sometimes that comes down to disagreeing with a medical profession and that is okay! (As long as your child is safe and healthy of course!)

If you are like us you have way more waiting room pictures than you thought possible!

Our second and third appointments were on the same day and that is so nice to knock 2 out at one time instead of taking a whole other trip! These were Pulmonology (Lungs) and Nephrology (Kidneys). These were very simple appointments since they are basically just following Mel for observation and follow ups! These are the kind of appointments I like NO BAD NEWS!!!

Waiting again!

 At the beginning of our journey I thought I would never see the day of appointments when I didn't leave the office crying because they wanted to test for something or they found something new. But it is here!! and I am here to tell you that this is a great place to be! If you are currently in the thick of tests, blood work and prescriptions just breathe. It will slow down, I wont say it will end because in our case Mel will have to follow up with certain doctors for the rest of her life. But that is okay, this is our journey. It's not at all what I thought having a child would be like but it is beautiful and if nothing else it is interesting!

Our daughter Mel is a gift from God. We worked hard to have her, we have worked hard to keep her here and I will work hard for the rest of my life to make sure she is healthy and happy!

What specialists follow your little one? How do you deal with all the tests and things that come with having a medically complex nugget? I would love to hear you thoughts in the comments!

I hope you have a fabulous day and I hope you get lots of cuddles from your little miracle! 

Love until another day,
Shelbi

Enteral Pump Feeds on the Go! Bolus & Continuous!

 First of all I hope everyone had a beautiful blessed Thanksgiving!!

  When we first brought Mel home from the NICU she had a AMT Mini-One Gbutton and she received a bolus feeding every 3 hours day and night. In February 2017 Mel was converted to a Mic-Key GJ Tube. At this point she was on continuous feeds for 20 hours a day. Both of these ways of feeding can be tricky when out of your comfort zone! These are my tips for feeds on the go!

Here is a list of things I always pack and handy things that make it all way easier!

Feeding Pump: Your will receive your child's feeding pump from the hospital before you leave and it will most likely be leased from you supply company. We were given the Infinity Orange Enteral Feeding Pump. This pump has an option for the food type and you can choose either breast milk or formula. When we came home from the NICU I was exclusively pumping for Mel and she was on my breast milk. We have also used the Blue Infinity pump and while it does not offer the option for food type, it worked for breast milk just fine! This pump is small, lightweight and does not have to be in an upright position to work. Some people are sent home with a Kangaroo Joey pump, unfortunately I am not familiar with that pump but if you have it and have questions I can research it for you!

Food Bags: We started out with the Moog 100mL Enteral feeding set and have since moved up to the 500mL feeding set. You will receive these in your monthly shipment from your supply company. We simply moved up because she was tolerating a higher volume than 100mL.

Extension: You will need the Y-Port extension to attach to the bag tubing and then to your child's button. If your child has an NG or OG the bag will attach directly to that tube. 

Bottles and Ice Packs: When I knew we were going to be out for several hours I had to pack a couple feedings for Mel. I used the 4 oz Medela pump bottles to carry her breast milk and I kept it in an insulated pocket in our diaper bag with ice packs to keep it cool. We live in Texas so this was very important both while she was on breast milk and formula! I also kept an ice pack in her pump bag and just placed it behind her food bag to keep it cool during a feed!

Medications and Food: This is a no brainier, so you think. Until you are getting that sweet baby all packed up and ready to go. I have always and still do bring more food and necessary meds than I think we will need. This drives my husband crazy because I look like I am packing for multiple days out of state instead of a trip to the doctor. But there have been several times that our plan is to be home before Mel's next feed or before her medication is due, but the doctor runs late or we get stuck in traffic and I am very grateful that I packed more!! You will also need to have all syringes necessary for meds!

A Feeding Backpack: When we were getting ready to leave the hospital they gave us one back pack and another from our supply company. (Pictures below)
We have always used the backpack we received from the supply company, it is a bit bigger and I am able to keep things in it like medications and extra supplies as well as her food bag and feeding pump. We still have the smaller bag that Mel can wear if she needs to be on her pump during the day.

 Back pack from the supply company. You can buy feeding adapted back packs off Etsy or you can look on Pinterest for directions on how to modify your own! This bag is the perfect size for all of Mel's feeding supplies and I can also wear it is she is on a feed!

 This is the back pack that we received from the hospital. It is quite a bit smaller and would work really well if she needed to wear it!

Stroller Clip: I received this Munchkin stroller clip at my baby shower and when I got it I honestly had no idea what I would use it for! It has been AMAZING attached to Mel's feed bag and clipped to the stroller (or shopping cart) while we are out! I would highly recommend that you get one!

 

The first time Mel saw a fish! As you can see the bag clipped to the side of the stroller and her pulse ox in the carry bag looped around the stroller handle!

Of course all this is in addition to all your typical diaper bag things, breast pump and components if necessary and other medical equipment you may have. We personally have a Pulse Oximeter and a Suction Machine. Your will also need to carry extra G-button supplies, I keep this bag in the Diaper bag so that it is with us at all times!

Bolus Feeds

When doing bolus feeds I would fill the bag for each feed and it would run over 1 hour. I would always clean the bag with water after the feed finished. It was easier to clean while it was still fresh vs. after the milk/formula had been sitting in the bag for a while!

*Random funny story* 
The tops of the 100mL feed bags just snap on, they do not screw shut. One day my mom and I had taken Mel to the mall to have her pictures with Santa done. When we got in the car to leave it was time for Mel's feed. I was sitting in the backseat behind my mom trying to set up the feed and prime the bag. While I was squeezing the bag to prime the hose the top popped off and breast milk shot all over the car and the back of my mom! Oh gosh this still cracks me up to this day! 
Okay I just had to share that!!

Continuous Feeds

There isn't much difference between Bolus and Continuous pump feeds while out. The only thing that I do different is just fill the food bag up with however much food we will need for the trip. If we might need more I would bring an extra bottle of food to refill the bag.

While your child is on a feed either bolus or continuous always be aware of their food tube! Sometimes it can get snagged and pulled. (This will happen it's inevitable) Just be aware so that you catch it before it pulled the button out or causes discomfort to your little one!

Left: Me wearing her back pack while she is hooked up to a continuous feed.

Right: Feeding back pack hooked to shopping cart with Mommy Clip while on a continuous feed.

Do you have any questions about tube feeding your little one on the go? Do you have anything that is a life/sanity saver? I would love to hear your thoughts and know of any great products you sear by! 

Remember to kiss your tubie, say a prayer and enjoy the heck out of that wine, 'cause girl tomorrow is Monday!!

Love until another day,

Shelbi

The questions, stares and downright ignorance around feeding tubes!

   When you are out with your child, they have to eat. Just like any other human being has to. The difference is that some of our children eat a little differently. 15 months into this life I am still really surprised by the amount of adults that will blatantly stare while I am feeding my daughter.

    Last night Mel and I went to eat at our local Cracker Barrel with my parents. We arrived at the restaurant at 6:15pm and it was time for Mel's dinner. I know that feeding tubes are different and that people do not see them everyday and they are curious, I get that. But I am sitting there with my family and my daughter trying to eat while also pushing Mel's food via syringe and at least 2 tables of ADULTS were just sitting there staring. not trying to be nonchalant or anything just legit staring.

   Since Mel is only 15 months old she does not notice the looks, but someday she will. And it hurts my heart that someday I may have to explain to my daughter that she is a little different and that sometimes rude people don't know any better.

   I have had a few people ask me what the tube is coming from under her shirt and let me tell you I just want to hug these amazing people. They want to be educated, they want to know so that if they see another person with a tube they will know that it is instead of staring and assuming there is just something wrong with the person. I love explaining Mel's tube, why she has it and telling our story. I want to advocate for not only my daughter but all the tubie children and adults in the world. I want to be a part in dissolving the stigma around feeding tubes and differences in general.

   Some people ask stupid, rude and disgusting questions. When Mel was about 3 months old my mom and I were at the grocery store. At the checkout the cashier saw Mel's tube and promptly asked "Whats wrong with her" with a disgusted look on her face. I explained that it was a feeding tube and the lady responded with "poor baby." Umm no birch. first of all there is nothing "wrong" with my baby, she is perfect and we are blessed that she is even freaking alive. Second she is not a "poor baby" she gets every single nutrient she needs through this tube and she is growing like a champ! Although I said these things in my mind I still cried when we got out to the car. That was the first time something like that had happened and I couldn't believe someone would be so callous about a beautiful little girl.

   There have been a few times since then that stares and comments have really gotten to me. But as time goes on I am more educated and able to really explain feeding tubes and also as I get older I just don't really give a shit about what people think. If you are new to tubie life, people will hurt your feelings, the stares will bother you and would will wonder if it will ever get easier. And I am here to say it does get easier. Yes there are times that I just want to punch people in the throat but for the most part I either try to blow it off or I try or educate that person.

   Our children are perfect gifts from God and we know that. That is all that matters. But we are human, we have feelings and most of all we know that our children have feelings and Mel's are what I am most concerned about in this situation.

    Have you ever had a situation like this happen to you? I would love to hear what your thoughts are on this topic and how you deal with less than couth people. 

As always kiss those precious miracles, say a prayer and enjoy your evening wine!

Love until another day,
Shelbi

4 types of feeding tubes in 6 months!

My daughter Mel had 4 different types of feeding tubes in her first 6 months of life. I will describe each tube, this will help you understand a few different types and also familiarize yourself with them if a feeding tube is a possibility in your families future.

First was an Orogastric (OG) tube. This tube was placed in Mel's mouth and passed through her throat and down to her stomach. This tube was taped to her skin at her lip and chin. Mel had this tube placed at 18 hours after birth due to copious nasal secretions (aka a shiz ton of snot) that was worse while she was nursing and it was blocking her airway causing her oxygen to drop. This tube allowed Mel to get all the nutrition she needed while not having to work and burn calories and also not create additional snots!

On September 19, 2016 when Mel was a month and 3 days old she had her AMT Mini-one gbutton placed. This feeding tube is placed on the left side of her abdomen directly into the stomach through the abdominal wall. With this tube we could finally see her sweet little face without tape all over it holding the OG tube. I LOVED this tube! It was low profile and fit well on her tiny belly. I didn't feel like it got caught on much and I never had an issue it granulation tissue. 

In January 2017 Mel got very sick, we found out that she had aspirated reflux into her lungs and that resulted in pnemouina and a collapsed left lung. She was intubated in the PICU for 2 weeks and that will forever be one of the worst times of my life. In order to prevent her from refluxing the doctors decided to try an NJ (Nasojejunal) feeding tube. This tube went in through her nostril and went down through her stomach into the part of her small intestine called the Jenunum. Since her food was bypassing her stomach it cut down on her reflux significantly! The problem with this tube was...

 1. It was very easy for her to pull out. To replace this tube we had to have an xray to be sure in was in her Jejunum before she could be fed. This was a pain because even in one of the best children's hospitals in the US if it's night time, a weekend or a holiday it's going to take forever and a day for an xray!

2. She already has a hell of alot of snot in her little nose and it was just clumping around this damn tube. To keep her from pulling the tube out they installed a "bridle". This was a piece of fabric that clamped to the tube and wrapped around her septum. If/when she did pull on it, it would not feel good so it would deter her from pulling it. The bridle was SO terrible with all her secretions! I basically demanded we had to figure something else out before we went home! 

(I would like to add that a bridle is a great option for some people! I have seen children with them and I have spoken to parents that swear by them! So don't let our experience deter you from this as it is minimally invasive.)

Finally in February after arguing with doctors about Mel's NJ tube just not cutting it, a doctor agreed convert her G-button to a GJ tube!!! The reason this took arguing to achieve is because at the time Mel only weighted 11 pounds. Most doctors require patients to be at least 22 pounds to convert to a GJ so the procedure can be done in Interventional Radiology instead of the OR. This glorious man told me he could and would do the procedure in the OR and we could get that terrible tube out of my babies nose! So we booked it! 

Mel still has her GJ tube and after 7 months of continuous Jejunum feeds we are converting her to a blended diet that goes to her G (stomach)!! I will explain continuous feeds and our blended diet transition in a later post! 

So I guess you could say we are pretty well versed in the tubie life! I would love to know if your little one has a tube and what type! And as always I am always game to answer any questions!!

Love until another day,

Shelbi

It's not as scary as it seems... Seriously!

     The doctor just recommended a feeding tube for your child and you are simultaneously terrified, grateful, devastated and hopeful for the future.

     I know this because this is exactly how I felt the day our neonatologist came in and talked to me about placing a G-button in my 20 day old babies belly. Up until that point Mel had an OG or orogastric tube through her mouth and I had been hopeful that she would be able to eat orally before we left the NICU. The thought of a G-button  was so scary, would I know how to take care of it? How would I feed her in the real world? How would I handle the questions and quizzical looks from strangers? All these questions swam around in my mind even through 2 classes on care of the button and stoma (skin around the button) and all our nurses telling me it would all be okay.

Guess what ladies and gentleman, it was all okay. Yea at the beginning I was so nervous and I felt like there were a million steps and I just knew I would forget one and the entire world would burst in flames. But even as I did make mistakes and I did forget steps, all was okay. Here are my recommendations for what to do if this becomes or has become a reality for you!

1. TAKE A DEEP BREATH!  Yes this is number one because you are about to learn alot. the nurses, doctors and other staff are about to show you a bunch of stuff you have never seen before. Your are going to be overwhelmed but it is okay!

2. Write EVERYTHING down. Even if someone or even you thinks it is stupid. I can't tell you the number of times I have referred back to the spiral I had with me in the NICU!

3. Ask all the questions. If you don't fully understand something ask again, if the person trying to explain it still isn't making sense ask someone else to explain it to you! The day we left the NICU the nurse was trying to explain to me how to set Mel's food pump. And it was 120% going straight over my head! I asked her to write it all down and I still have that piece of paper!!

4. Don't bottle up your emotions. I say this because I have met a lot of people in the hospital and we spent a fair amount of impatient time during Mel's first year. If you need to cry, do it. If you need to talk to someone outside of your situation, let your child's nurse or doctor know that you need to speak to a counselor or a chaplain. During our NICU stay a counselor kept coming in to talk to me and I was too prideful to admit I needed "therapy". When Mel was admitted into the PICU that same counselor was the first person I asked my nurse to find for me! It helped so much to be able to vent and just talk to someone who was looking in from the outside.

5. This will be your new normal. It all feels so new and overwhelming at first but trust me. You will wake up in the middle of the night and give meds or change the food bag half asleep and you will do it perfectly 98% of the time. The other 2% of the time you will forget to turn the pump back on or you will not reconnect a tube and you will "feed the bed". It will happen. You will cry and you will feel like the worst mother ever. But no one is perfect and your child will love you even if they sleep in a puddle of formula for a few hours!

So mama, be easy on yourself. Love on your baby and thank God that you were blessed with another day. Ohh and have a glass of wine while your at it!

Love until another day,
Shelbi

Welcome to Feeding the Roof!

Hey y'all!!!

I am Shelbi! I became a tubie mom on August 17, 2016, 18 hours after my beautiful daughter Mel came in the world! I didn't know it at the time that I would join a community of strong determined mothers that would do absolutely anything for their little's.

                                                           

I have learned so much on this crazy journey and I want to create a place where new and experienced tubie moms can come for advice, questions, tips and just to know someone out there has the same insane thoughts and feelings as you!

                                                           

I am just a normal mom trying to get through every day with a toddler that happens to eat a little differently. I curse, my hand writing sucks and I love Jesus and my family. So no matter if you have a tubie, have found out your little with be receiving a tube or you just think i'm funny (a girl can dream okay) I hope you enjoy this safe space!!