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