Jemma with her hair fixed like her momma got done
I left the hospital yesterday for a few hours. A friend of mine from high school set it up for me to get a complimentary hair cut at a local beauty school. I hesitated but asked the nurse straight out if Jemma was good for me to leave and she said she was and to go. So, I did. When I got back, Jemma had the pink barrette in her hair and her nurse said she got her hair fixed since her mommy did. So sweet.
Last night, Jemma’s chest tube stopped draining and bubbling again. I was worried because they couldn’t do anymore of the TPA to break up the clots. If her chest tube didn’t work, what did that mean? I was scared she was going to have to undergo another procedure to have her tube replaced. Jemma is a fighter though. Her lung did NOT deflate and she tolerated the chest tube not working for hours… and hours… and hours! Almost 12 hours to be exact. Before, she couldn’t handle the tube to be clamped at all without her lung deflating. This time, she had no complications.
The good news is that today the tube started bubbling again (meaning there is an air leak) but the bubble is very slow like it was when it was working last. Jemma being able to tolerate the tube not working means that the air leak is healing and that her lungs are getting healthier. The elasticity of her lung tissue has to be improving for her to be able to tolerate the little pressure that was there due to the chest tube not draining. It did start bubbling, like I said, after Jemma was laid on her side.
This is how she sleeps at home… on her side. Normally I am laying there with her though. 🙁
One thing I have learned about my baby is that she is very much like me. She doesn’t quit, she doesn’t hesitate to let you know if you upset her, and she is stubborn. That not hesitating to let you know if you upset her is the big one today. Jemma had a very up and down kind of day. She certainly is doing okay but, for awhile there, we had a touch and go feeling. She was on the “vacation” or “holiday” from her paralytic and her pulse was erratic. Her oxygen saturation tanked. It was so frustrating because, just like every other time, she was fine prior to this.
They quickly did a chest xray which showed no change (yay!), increased her FiO2, monitored her temp closely, and finally ran some blood gases. The verdict? She was pissed off. She did not like that paralytic wearing off. She still couldn’t move so there was too much in her system to allow that. She was just not happy with the nurses, the paralyzed feeling, and basically everything. She is just fed up. My poor baby. I stayed by her bedside for 4 hours though just in case she would move enough that I could hold her hand and she actually grab back. Unfortunately, this didn’t happen. She started trying to breathe over her oscillator vent and the paralytic was restarted. Maybe tomorrow.
The thing on her forehead is a BIS monitor that our nurse was using to test her sedation level.
She has had no further increased temps since yesterday, her yeast infection on her neck is clearing up (she got it from drooling and it being moist), her skin is getting pink in areas so they are putting duoderm (a protective patch) on her shoulder blades and coccyx, her bottom is being lubed up well to avoid breakdown, and she is doing well with her oxygen saturation (for the most part). They are taking care of her bowels, her feeds are going well, and her tube is placed right. At this moment, I am waiting to hear how the latest blood gas and chest xray came back. I pray there are no new pneumothorax and it only keeps looking better and better.
The plan for the next few days is to keep weaning that oscillator vent, to decrease her oxygen needed, and to monitor her chest xrays. I told the doctor that my biggest goal is to get rid of the oscillator so I can HOLD MY BABY!!! She knows how important this is to me and said she is excited for us to get to that point too. Hopefully next week we will be on the road to that.
So, the sweet part of today just happened about 10pm. Jemma got that chest xray I was mentioning above. Remember how I said she gets mad and lets you know it? Well, it usually happens when they move her for xrays or procedures, suctioning, changing… okay, all the time. She doesn’t do it when I touch her but she does with the nurses and doctors. Anyway, tonight she was such a good girl. They did the xray, she was re-positioned and her vitals stayed good. Her pulse was great, her blood pressure amazing, and even her oxygen sat was 96%. That is my GOOD girl!
I had a little emotional breakdown today and will share about that tomorrow. For tonight, I want to end on this good note. I really feel my baby is getting better. It is slow. They doctor says it is a slow process (remember marathon, not sprint) but I feel good about her progress. We know we have weeks, even months, to go before she is better but I have hope. I won’t give up on my baby. Her pediatrician, who I talk to daily and see daily when she is in town, said she is very impressed with how Jemma did without the working chest tube. She said Jemma is doing it… she is beating this! So, for tonight I will leave you with that.
My baby is doing this. She’s got it! Please keep praying for her because I truly do believe that prayers help. I ask that you send a prayer up for me too. This is so hard. I cry often, want to break down frequently, but never leave her side. I hate being here but I wouldn’t be anywhere else if my baby is here.
Oh, one more thing… Her WBC today is down to 15.1k!!!! This is down from 17.1 yesterday and 25.8 the day before. Way to go baby girl!
(You can click the Prayers for Jemma on the top of this page for a look at all the posts regarding Jemma’s illness)
Tricia Nightowlmama says
yah!!! sending more prayers I think they are working. Hurray!! Your staying so strong and I hope that you can feel the love from all who respond to your posts. waiting on your next update. {{{Hugs}}}
Jayne Townsley says
Glad to hear some good news.
Elizabeth says
Thank you for the update. I am praying for your strength as well as complete healing for your sweet fighter. We know that God does the impossible at all times.
Valerie says
Your husband came to my business to deliver my water he had has me if I was a religious person, he had asked me and my family to pray for his beautiful daughter Jemma to get well soon, my heart has been so full today with thoughts of you and your family, I have a 5 year old grandson I know I would be very overwhelmped with this also, I will hold you and your family tight tonite in my prayers God will answer our prayers!!!!
Lindsay Allan says
Stefany,
I don’t know if you remember me, but I remember you from forever ago (BGs, etc etc). I have been following your Jemma’s story through our mutual facebook friends and just wanted to let you know that I was thinking of you all and praying for a quick recovery of Jemma.
If you ever want to talk, I’m here (I think you can see my email address with the comment, if not, I’m on FB), my Logan spent 2 weeks on an oscillator, was off for 2 weeks and then back on for another 2 weeks. Although our reasons for being in the NICU were VASTLY different (Logan was a premie and had other health complications), I know it can help sometimes to talk to someone who can understand how you’re feeling. Not being able to HOLD him was such a huge thing for me too.
Praying for and thinking about you all.
Huge Hugs
Lindsay
Regina Sullivan says
I have been praying for your baby girl and for you ever since I read your story…so glad to hear that we are seeing some improvements! prayer is working!
Uneeka Jay says
I am praying for your precious little girl. I am also praying for your strength.
Jennifer @ Mom Spotted says
Hugs mama! It’s so incredibly hard and draining. She IS getting better and she IS a fighter. Know that in your heart of hearts!
Lyuba @willcookforsmiles says
So glad she is getting better and better! Strong little fighter 🙂
Monica says
Praying for you and your sweet girl!
Mel Lockcuff says
Stefany, I’m so glad to hear that she’s starting to show improvement! So happy! We’ll keep praying and sending healthy thoughts and vibes your way. {Hugs}
Malia says
So happy to hear of the improvements!
Mary Mazzola says
You do not know me. I am a friend of Mary Williams who you went to school with. I will commit to praying for you and your baby daily until she is healed. I am a born again Christian who believes strongly in prayer and the difference it makes in our lives. I love children. I have 5 plus 5 grandchildren and one on the way in April. So it will be easy to remember to pray for you and your family. God bless you and hang on.
Alyssa McVey says
I can’t tell you how happy I am that she is strong and fighting! As a mommy it breaks my heart for you. Praying she will continue to improve and as quickly as possible! Crying is OKAY! It’s just an appropriate emotion and nothing to fear or be ashamed about.
hollowsins says
I cannot imagine the strength it has taken to get through all this. She is a beautiful baby girl and you are doing fantastic too. Hugs to you both and all the positive wishes in the world to you all
Sheila belcher says
I will be praying for God to continue heal Jemma. Also praying for God to give you strength and comfort so you can continue to guide and comfort you baby girl through this difficult journey. God Bless you both!
Jennifer says
Praying for you, your gorgeous strong-willed girl and your family! Congratulations to Jemma on the improvements.
LisaLisa says
Sending many many prayers! Hugs and much love to you both….again we serve an Awesome God and he is right there with Jemma and you!!! :0) All progress is a very good sign, she’s a strong little girl and so is Mommy!!
Toni Marie Caravello Feimer says
so so sorry you both are going through this… i tear and pray for you that this will end soon and your baby will be bouncing healthy and happy as she is meant to be.
Dawn says
I pray for you continuously since I found your story. Jemma looks like my Jessa, their names are so close, and they were born within days of each other (maybe closer). I pray for strength and courage for you and your family, the doctors, nurses and other staff and of course for sweet Jemma. Love, prayers, and hugs!
Amy says
I have been there. It feels like a Mac truck hits every time a dr walks in with more bad news. Kicks your knees out from under you. These little bits of improvement is all you can cling to right now. With quiet, res, and amazing dr’s and faith, your girl will climb up this steep mountain to return to you. And it will change her personality forever. I thank God for the days when David fights me. It is what I prayed for and God answered. Keep going, you can do this!
Amy Sedor, friend of Cheryl Walsh
Debby Pucci says
Stephany, I am so moved by the progress she is making. Even though it is a slow process the improvement sounds so good. I have Jemma in my prayers and pray for her improvement each day. ((HUGS))
Julie Grayson says
Hi! I found your website from another Mommy site who shared and asked for prayers for you. My heart is breaking for you watching your sweet baby girl in the hospital. I’m praying for you and your family!
I can do all things through Christ, who strengthens me. Phillipians 4:13
Colleen Anderson says
I’m so glad to see the Jemma is beginning to improve, even since the last post I read. This has got to be one of the hardest trials you have ever (and will ever) face, but remember, what doesn’t kill you only makes you stronger. Your little sweetie will be even stronger, too. Prayers for the whole family…
Sarah Penner says
Praise the Lord! I love hearing the small improvements Jemma is making. What a strong little girl. My heart still breaks for what you and she are going through but we will continue to pray that she get’s better and better! I can’t imagine how tough it is but I can see that you are strong just like Jemma. It’s okay to cry, okay to vent frustration. Remember each day to find at least one positive and it looks like you’re doing that wonderfully! I look forward to the day that you and Jemma go home. Praying for healing for Jemma, strength for you and wisdom for the doctors and nurses!
Shemena says
I’ve been following you and praying for you for several days, and I just want to let you know. There are probably many of us waiting in the wings, supporting you and your family in our hearts. She is beautiful, and you are a bad ass mama.
I’m sharing this with friends of mine who are medical students, and I hope you don’t mind. I really think, particularly for those going into pediatrics, that it would be helpful for them to *read* what goes on in a parent’s mind while their kid is fighting for his or her life. You are writing about this in such a powerful way, and it provides valuable insight into a process that none of us can really imagine without walking through it ourselves.
I have two little boys, and one has special needs. When my youngest was 10 days old, I had to hand him over to be anesthetized for an MRI, and when you described what that feels like, tears welled up in my eyes. I’m so happy she’s getting better, that she’s fighting and that you are, too. You keep fighting, mama. You’ve got this, and we’ve got your back.
jenniferhenry says
in the name of jesus she is healed the devil is a liar… i plead the blood of jesus
Alena Belleque says
I have been following your Facebook statuses about this, but finally got a chance to come over and read. I am so sorry little Jemma is going through this, and you as her mommy :'( Nick and I are praying for her, and for you, and will continue to do so through this trial. *hugs*
Eliza Thornton says
Oh my goodness. I will be praying for your sweet baby. I am so sorry this is happening. You are a strong momma. I will be adding Jemma and your family to the prayer list at church.
Let me know if you need anything. I know we don’t know each other really. I don’t even know if you remember me. We met at the graco thing at toys r us. But if there is any way that I can help I will.
You are so in my prayers!
Twylla says
My prayers continue for your baby, you and the medical team caring for her. My heart goes out to you.
Michelle Hagewood says
I’ve been following your story and praying along with you and everyone else. I cry each time I read your posts even when it’s good news like today. I just can’t imagine the pain you are going through. Back in September my 2yo daughter was diagnosed with MRSA and had 2 huge boils that had to be lanced and drained and because of the location of them they couldn’t be numbed first because it wouldn’t have worked. I had to hold her down, along with a team of nurses, and watch them cut her open and squeeze the boils to get the infection out. That is the only feeling I have to relate to your pain but I know yours is much worse. No mother wants anything to happen to any of their babies, especially something that we had no control over. Jemma is obviously fighting to get back into your arms and I can’t wait until I can see some pictures of that and a whole lot less tubes going into her little body.
Just remember that God doesn’t give you more than you can handle even though I’m sure you’re questioning that phrase. I’ve done it before but when it’s all over I look back and realize that it only made me stronger. We’re all rooting for you and Jemma to make it through this as quickly as possible so she can go back home where she belongs! Stay strong and don’t feel guilty for taking a little time for you. You won’t be any help to Jemma if you aren’t rested and taken care of as well.
Crystal @ Color Me Crystal says
GO JEMMA and GO MOM!!! I know it’s tough and it’s hard to be strong. We are praying for her and for YOU…for the whole family…for the doctors and nurses and other staff involved. GOD’S GOT THIS!!! <3
Whitney says
Praying for you guys! Glad to hear some good news! Keep your held high Momma you are doing great! She is a strong little girl.
Sharon/Nanna_j says
Steph,
Such wonderful news for this day.
Am so happy to hear how Jemma is really hang in there and fighting for her life.
Have said a prayer for both Jemma and you.
Hang in there. Hugs.
Stefany says
Thanks Sharon!
Tenille says
Following along with your story though it makes me cry (from happiness at the good news and sadness at the not so good) each time. Prayers going up for you tonight as well, mama….you are stronger than you know. We’re all behind you out here!
Stefany says
Thank you Tenille. I don’t feel strong but I just keep chugging right along with Jemma. Nothing will keep me from her side to help her get better.
MommyJenna says
We love you Jemma! Such a strong little girl!
Stefany says
Thanks so much for your support Jenna. <3