Jemma hospital

Jemma ToBeThode

This post comes after another very long night of no sleep.  Bear with me for a few…

You wouldn’t know from looking at that sweet baby above what troubles she has. You wouldn’t know that she has lungs similar to that of an aged person. You wouldn’t know the fear and anxiety that troubles her on a daily basis. You wouldn’t know that she struggles to breathe some days. How could you? She looks beautiful; like any other child living their life.

But I know. I know and it breaks my heart daily. Jemma is not any other child. Jemma is special… wonderfully beautiful, blessed, special.

Jemma is suffering from night terrors on an almost daily (nightly) basis. I have tried all I can but they persist. While this is a somewhat common issue among children, this is not a normal thing for Jemma. When she has night terrors, she reaches for me. Like any other child experiencing night terrors, she is unconsolable. But, this is a bigger issue for someone with Jemma’s issues. Jemma reaches for me, grabs me, won’t let go of me. In addition, she screams to the point of not being able to breathe. This leads to the question of whether I need to medicate or try to let her work through it because as I have mentioned before, the treatments are a nightmare and seem to be counterproductive at times.

My sweet baby lives her life the way she wants. She plays, runs, acts crazy. She has no idea the amount of fear that lives inside of me and her dad. Each day goes by and I thank God for her being here. Each day goes by and I cry for the baby that I almost lost who is here with me but suffering. She just doesn’t know it isn’t supposed to be this way.

I struggle with my own feelings on this. Don’t take this as a post about me bitching about my baby or not feeling or truly knowing how blessed we are. Believe me, I know that we are blessed. I know how close we came to losing my sweet girl. As her mom, I want her to be okay inside and out. I don’t want her to suffer through breathing issues. I don’t want her to have such anxiety about being away from me that she cries to even stay with her dad or when she can’t find me in our house. I don’t want her to have any memories of what happened to her but she does. I see that every time she walks into a doctor’s office.

I think she is perfect. Beautiful and perfect. I just hope her life is as perfect as she deserves, despite all she has been through. I want her to live the kind of life she wants, without limitation. I pray her lungs heal. I pray the doctors are wrong and she will be able to live a completely normal life… not for me, but for her. I want her to run, swim, play the way any other child can do. I want her to never know the true damage that her illness caused. I want to be able to one day sit down and tell her about her illness and her be surprised at how she has no lasting problems.

I love my baby… no matter how her lungs look, how she breathes, how she sleeps. I love her more than I thought possible. I only want what any other mommy wants for their baby. A long, healthy, happy life. I will give her that one way or another. I will do anything I can. After all, she is my baby. My sweet, special baby.

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Quick (but amazing) update on Jemma #PrayersForJemma

January 26, 2013
Jemma extubated

The past few days have truly been amazing.  I can say that I am truly surprised, as are most of those that have cared for Jemma, how well she has done since being moved to the conventional ventilator.  I mentioned in my last update that on Monday, the 21st of January, she was moved to the conventional ventilator.  She continued to do well and was weaned each day.  On Thursday, the 24th of January, I was given the best blessing.  My baby girl was extubated!!!  She passed all her tests and they came in about 2pm on Thursday and pulled the ET tube out.  It was amazing to see her without it. The first time I have seen her without a tube in her mouth […]

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My little fighter keeps on fighting #PrayersforJemma

January 23, 2013

Hanging out with my big kids.  It is so hard being away from them but they are doing great with my mom and dad.  I am so blessed to have them in my life to take care of my babies for us. Wow, it has been a whirlwind of activity and change the past few days.  I left off with weaning Jemma off the oscillator vent.  Well they decided to make the jump early (were planning by Wednesday) Monday morning because she had so much stuff in her chest that they could not get to with the oscillator vent.  They needed airway clearance and the only way to get that was to switch her over to a conventional vent.  With that they could suction more […]

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My worst nightmare

January 16, 2013
Jemma in ER

It has been some time since I have been able to get here to the blog.  I know that isn’t completely new but this time I have a real, and horrible, reason.  You see everything in my life changed on January 1st.  Jemma was coughing a little bit on the 31st of December and I slept in a chair with her that night.  On the 1st, she was still coughing.  When I pulled her into my lap for a nap, I heard her breathing and she was struggling while at rest.  I brought her to the ER.  She was diagnosed with Croup and, after 3 unsuccessful breathing treatments and a dose of steroids, we were transported via ambulance to Children’s Hospital.  On the way there, […]

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