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