This is what I have seen every day for the past week. One week ago today my baby went for a procedure and came back to me like this… my heart hurts.
It has been a week since I have seen the beautiful smile of my precious baby girl. A week since I heard her cry. A week since she said “mama” or “baba”. Her limited vocabulary grew as we have been here in the hospital. Prior to her PICU stay, Jemma had learned to say “no”, “go”, and my personal favorite “all done”. She would tell the nurses or doctors to “go” when they came in. She would have enough with whatever they were doing and say “all done” or hear the sound of the isolation gowns ripping off and say “all done” as she snuggled into my chest.
I can’t tell you what I wouldn’t give to hear that voice, see that smile, see the baby I know is hidden inside that body.
On Wednesday the 16th, I did get to see a little glimpse of my beautiful baby. Every day they do a paralytic “vacation”. They turn off her paralytic medication for 40 minutes and see her comfort level and basically just check how she is doing under all that medication. On Wednesday, I just happened to walk in a few minutes after the “vacation” started. I wasn’t sure what to expect and I will be honest in telling you that it was a bit strange to see her “asleep” yet still moving. I was talking to her telling her how proud I am of her, how she is my little fighter, how mommy loves her soooo much. I saw her hand start moving. I went around to the side of the bed with her moving hand and talked to her more.
My baby turned her face towards my voice. SHE TURNED TO ME!!!
Then I placed my finger inside her hand.
She grabbed my hand. MY BABY GRABBED MY FINGER!!!
After 5 days since this nightmare began, this was the very best thing I could have asked for. I can’t put into words what it meant to me to see her face turn towards my voice. She knew I was there; she reacted to my talking to her. And then for her to squeeze and hold on to me… oh my… words can’t even begin to explain my joy at that moment.
No more than a minute later, Jemma started to move too much and they restarted the paralytic.
I held her hand until the grip she had on me was gone. She was limp. Once again, my baby was hidden inside her body. I walked out of the room and cried hysterically… for the joy of having that experience and for the sadness that she can’t just come back to me now. She is there though and proof is in the feeling I still imagine every time I place her hand on mine.
To anyone reading this that may not get it, let me explain something to you. I went from having my baby being sick and talking to me, crying, whining, and being a stubborn little girl to a limp baby who appears to be sleeping all the time. You can only know that something is wrong by the vital signs or sometimes she has a tear roll down her face. The tears break my heart… I hate that. I have been told that she is having some great dreams under all those medicines. I sure hope they are because this truly is a nightmare to me.
But, for one brief moment, I saw a light at the end of the tunnel and, let me tell you, it is a beautiful one. My baby Jemma is my light.
Unfortunately, I have not been able to be present for a “vacation” since then but will soon. We met our new doctor for this week and she seems very nice. I have some new things to tell you but they aren’t as wonderful and beautiful as the experience above so I will save those for tomorrow. I will just share the wonderful, beautiful experience that has given me hope.
If you don’t mind, please share with the buttons above. I believe in the power of prayer and would love more people to know Jemma’s story so more people can pray. Thank you!
All proceeds from the sale of prints, notcards and framed photos ect will go to help Jemmas family with Medical bills . Please visit my website and make a purchase today. Not only will you help Jemmas family but you will also have a beautiful artwork to hang on your wall or beautiful note cards to send to your friends .
Please visit MarySue Price Photography and enter Code JETAFG to receive a 10.00 discount or pay the full price and more will go to Jemma’s fund
http://marysue-price.artistwebsites.com/index.html
My hearts breaks for you and your family, i cannot imagine what you’re going through…..:(
Jemma is a fighter and she will get through this!!
sending hugs and prayers your way……
praying for your little girl and for the family may i ask what is wrong with her
Keeping you and your sweet little girl in my prayers!
how fabulous that you had such a special moment with Jemma. Keep remembering that she is in there and that she can hear you. She is your angel and your light and knows that you are there with her, loving her, and praying with her.
My thoughts and prayers are with Jemma, and your whole family. Take care of yourself and your other beautiful babies, too. HUGS!
Un abrazo para ti y tu familia… estamos orando por Emma…
My heart breaks for you just reading this. Prayers for you and your Baby girl.
You can add me to the long list of people who are and will continue to pray for you and your family.
Praying for jemma and your family.I know how you feel my daughter 13 was on a ventilator in may 2012 she has cystic fibrosis I took her into the E.R for kidney stones to find out she had a double blockage same size,same spot, they tried to flush them out with fluids,and they ended up putting in stents the next day.then my world came crashing down she was in the pimcu and her o2 stats just keep dropping and her body just started swelling Her carbon dioxide (blood gases) went to 120 which was dangerously high she was on bipap to try and bring them down I still replay that day in my head (she is very sick waiting for a double lung transplant) I was told she needed to go on the ventilator to save her life ( or we could lose her on the vent).When I shut my eyes I still see her lifeless body laying in the bed.It is a very hard thing for anyone to go through.She was only on for a week but the longest week of my life.And she had a pneumothorax 5 days after coming off the vent this wasn’t her first one she has had 3 and 5 chest tubes.if you need anything I am here for you I have been in that situation maybe I can help you and your family. I stayed with her the whole time she was in for a month and I have 4 other kids that were at home.
First off, I wish I were visiting your blog for the first time for happier reasons. But I needed to leave a comment because your posts and situation is eerily familiar to what my family went through this past fall. My 4 year old had croup, was on steroids, developed a rash whose source was unknown. Nearly everything you wrote about happened to him too, from the ER to PICU to doctors not knowing exactly what was wrong. It turned out that he also had a staph infection, which led to scalded skin syndrome, where his entire body was covered with what looked like a bad sunburn. He also had to be sedated for a week or so, as his breathing wasn’t good and the pain of his skin, as well as other complications, and it was so terrifying not being able to hold him and hear him speak. But it was also difficult when I was there, since when he heard me his heart rate would go up and I worried that I was making things worse, not allowing him to rest.
My heart aches for you and what you’re going through, and you are certainly in my thoughts and prayers, ever since I’ve heard about Jemma’s condition. I know you are probably overwhelmed with everything, but if you ever need to talk about things, I am available, a complete stranger who knows what you’re going through.
If you’d like to read the little I wrote about it, here are the links. It’s not as much as you’ve shared here, but my internet access was limited to my phone at the hospital, and afterwards, I just didn’t have the energy to write much about it.
http://www.katydidandkid.com/2012/10/the-best-and-worst.html
http://www.katydidandkid.com/2012/10/the-lost-october.html
Blessings to you, and hang in there. One step at a time…
What a wonderful mother you are. Your family is in my prayers.
Praying and following you and your family. I am so touched. Please let us know if we can help you. We bloggers are here and will help anyway we can…Hugs and Love
I wrote to you on FB.. My daughter went through a similar situation.. I pray everything starts to heal soon and that she’s fully alert and back to her beautiful self soon..
Tears, sweetheart. And prayers.
My heart aches for you and your little Jemma.
Praying so hard for your sweet baby. (((hugs mama)))
Just the thought of the experience has me crying too. I pray that this nightmare will be over for you soon and you can have that sweet little girl back in your arms <3 Love you.
I am just now seeing this! I am lifting up little Jemma in prayer right now! Also praying for all of you.
Thank you for keeping us posted on her. What a sweet, sweet girl.
I’m praying hard for your little one! ~hugs~
I’m so sorry you and your family are going through this!! I will definitely be praying. Keep your faith strong & you stay strong for that precious baby.
Here is the link to help out with the Thode family expenxes by buying a photo or note cards . ALL profit will go to the family
http://marysue-price.artistwebsites.com/pressreleases/all-profit-will-go-to-the-jemma-thode-family-.html
Please visit my photography website and enter the code below to receive 10.00 off of any order.
All proceeds will go to the Jemma Thode family , Jemma is a little girl who is critically ill … if you cannot afford a print please offer prayers .
http://www.tobethode.com/2013/01/worst-nightmare.html#comments
Please visit MarySue Price Photography and enter Code JETAFG to receive a 10.00 discount or pay the full price and more will go to Jemma’s fund
http://marysue-price.artistwebsites.com/index.html
stefany please contact me at the above email so that I can set this up with you . xxoo
I haven’t commented before but I’ve been following Jemma’s story. My heart and prayers are with you!
I am a first time reader, led here by God and Tots and Me. I am a mother of 4. My youngest is 15 and my oldest is 24. I have tears in my eyes and an ache in my heart for your little angel. I know what it feels like to have to sit back while doctors try to get your baby’s heart rate under control. My 20 yr old was in a wreck last year. That was the scariest time of my life. All we can do is pray, lay it in God’s hands, and wait for His timing. I will keep praying hard for sweet Jemma, for you my sister in Christ, for your family, and for those caring for her. Know that in this fight you’re not alone.
Praise God!! We are standing in prayer with you and Jemma, we serve an Awesome God and I’m praying hard for her and you. From one Blog Momma to another we are here for you and we’re praying for you!! Hugs 2U!!
Stefany – I had no idea it was this serious!!! Prayers coming your way to Jemma & u & the family. God makes miracles & we r praying for one! You are in my thoughts & I know this must be the hardest thing you have ever had to deal with in your life. Prayers for sweet Jemma!!!
Praying, Praying, Praying!!! God Bless!!!
You are all in my prayers! Hope she is home soon, laughing, smiling, whining and being that stubborn girl. Hugs!
I’m so glad that you were able to share something so simple and heartwarming as that with your little girl. She will continue to be in my prayers. God bless!
Stephany, I am keeping little Jemma in my prayers and my heart aches with you.
(((HUGS)))
((HUGS)) to you. You will both be in my prayers. I hope she is better soon!
I was awake in the night with my little one who had a cold and you were constantly on my mind. Prayers flowing even in the middle of the night. So glad you saw your baby. I hope that soon you and your baby are home, laughing and cuddling and seeing this all in your rear-view mirror!
My heart breaks for you. She is a little fighter and I hope that very, very soon she will be back to normal!
My heart is with your family. I pray that your nightmare will end soon and your baby girl will be as she was before!
Praying so, so , so very hard for your baby girl right now…(((hugs))) to you!!!
Your sweet little baby along with you, your family, her drs & nurses are all in my prayers.
Your little girl is in my prayers! Stay strong mama, she’ll fight through this!
I’m so glad that you were able to hold her hand for a few seconds. I will continue to pray for her and for you until she is home!
{{hugs}} I’ve been there. Not as long because Izzy only had to be fully sedated for a day but she was in and out the next few days because she kept getting all worked up. It is so hard, especially when they are fully sedated. It was the scariest thing I have been through and I hope I never ever have to be there again. I wish no one had to be there 🙁
I hope you get to be there for more “vacations”–to hold her hand and let her remind you that she loves you and how much you mean to her 🙂
May God continue to heal your daughter and give strength to you and your family. We are praying for Jemma.