The continued nightmare

by Stefany on January 17, 2013

One thing I forgot to mention in my last post was one thing that set me off when we were in APC getting ready for the procedure.  They wanted to put dilating drops in her eyes and check her eyes.  I was adamant that I did not want her to feel those drops.  I have had my eyes dilated and it doesn’t feel good.  I did not want her to have to deal with that because I could not explain it to her.  I was lied to though and this was part of my very large rant that day.  The eye doc came in and just put the drops in her eyes.  He just did it after I was told he would wait until she was sedated.  Jemma freaked out.  My poor, sweet baby went through that for nothing.  :(  He didn’t even do the test and came back later the next day to check her eyes anyway.  I feel awful that she endured that discomfort for no reason at all.  The good news is that there was no abnormalities with her eyes and definitely no staph!

Jemma Vent

Resting peacefully. She is just so beautiful.

So, where I left off is pretty much were we were until a few days ago.  Unfortunately, nothing with Jemma’s illness has been easy.

Yesterday, I had the worst experience I have had to witness with my sweet girl.  I went to visit her as I do several times a day.  As I was walking up, her light was flashing outside her room, her heart rate was in the 80s (it is typically tachy!) and her sats were in the 80s.  I was nervous.  The nurse came and bolus’d her.  Her regular nurse was gone on lunch.  The nurse on called respiratory.  They tried to inline suction.  It didn’t work.  Tried again.  Nothing.  Again.  Nothing.  The Fellow was in there.  Her primary critical care doctor was called in as well as several nurses, respiratory, a resident and the Fellow.  They kept trying to get her sats up and she wasn’t budging.  She was in the 80s.  Then, the words I will never forget came out of the doctor’s mouth… let’s bag suction her.

I couldn’t leave. I knew I needed to but I couldn’t force my feet out.  It killed me to sit there.  KILLED me slowly to see my baby taken off the ventilator and forced to breathe with an ambu bag.  My baby’s ventilator wasn’t even able to help her breathe!!  They removed the vent, bagged her, suction.  Bagged, suction.  Bagged, suctioned again.  The doctor kept bagging her for some time because her sats wouldn’t come up.  I sat in the corner.  I just sat there and prayed.

I begged God to please keep my baby safe.  Please God heal her lungs.  Please, I will take her place… take my lungs and save her.  Take ME!!!!  I will do anything if you just save my baby.

They were finally able to get her back on the vent.  Her sats were in the low 80s and high 70s.  The doctor said they sometimes need to just let the kiddos go and let them come back on their own.  I felt like my heart was on the floor of that ICU room.  I was assured that they would call me if anything happened.  The nurse told me she was staying with my sweet girl.  I had to go out.  I could not get the image of her being bagged out of my mind.  It will forever be there… just like the first time I saw her on the ICU bed.  I took a walk, cried, screamed, and begged God to please help my innocent baby.  I went to the chapel and made a prayer request and cried some more.

I walked into the hospital and my phone rang and the nurse told me to come back.  Jemma’s vitals had settled.  Jemma looked the same as before.  No changes in her vent settings were even needed.  She was basically where she was earlier in the day.

Jemma with some water off of her. She has eye sockets again!!  My God, she is just gorgeous even with that tube in her mouth.

And then today….

Her chest tube on the right side still shows an air leak.  The problem is that there is also a lot of mucous and stuff coming out of it and it keeps clogging it.  Whenever it clogs, Jemma’s lungs collapse again.  The nurses have been stripping it and that has helped… until today.  Today, it just stopped working.  There was no bubbling.  Her oxygen sats went down, her vitals were out of control.  They did all they could but it wasn’t enough to get it going again.  Surgery came and stuck an instrument up and suctioned but were still unable to get the big clog out.  They had to get this to work though because our next step is a larger tube and there is no guarantee that it won’t do the same thing.  The tube she has now is the biggest she can have without a rib resection.  I DO NOT WANT THAT!!!!

The surgeons came back with something called TPA and basically it gets up inside the chest tube, breaks up the mucous, and thins it out.  They had to clamp the tube off and she hasn’t been able to handle it for this whole time.  Today though, she was a trooper and did it!  Her blood pressure and pulse dropped drastically but she was able to recover with just a fluid bolus.  After just coming back from the room, they have pulled off about 5cc of fluid in 2 hours; she has only been doing 10 for an entire day!

After today’s issues her vent settings aren’t great but it is all about the baby steps.  I will give her those.  It isn’t like I could do anything anyway.  She is my little fighter and mommy is learning a huge lesson about patience.  Her nurse just called and said that Jemma had another huge diaper and she is putting out more than taking in so she is dry… that explains the high pulse rate.  She said they will revisit the Lasix dosage tomorrow.

So, for now, this is what we do.  We wait.  I pray.  I cry and pray some more.  I do want to share with you something wonderful that happened on Tuesday.  Today though, I am exhausted.  It really is exhausting being in the hospital all the time.  Even if you get good news, it still makes your throat drop into your stomach every time you see a doctor come to see you.  Every time my phone rings from the hospital I get scared.  I remind myself to breathe sometimes… in and out.  I know my baby girl will get through this.  I mean, she is kicking butt and taking names.  Her WBC is down to 25.8 today!  She is taking this infection out.  We just need her lungs to heal.

I hold my hand over her chest every day and pray for healing.  I picture the Holy Spirit entering her body and removing all the illness.  It is happening.  It really is.  Prayer heals so please continue to pray with us.  If you don’t mind, share this post or the other below so more people can pray with us.

The post explaining how all this began and more info on the benefit being held for Jemma and our family can be found in this post.

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{ 24 comments… read them below or add one }

Samantha F. January 17, 2013 at 11:06 pm

My heart breaks for you and your sweet girl. You all will be in my thoughts! I hope she kicks that infection and has a full recover. As a mother myself I cannot even imagine the pain you are in watching your baby.

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Stefany January 17, 2013 at 11:11 pm

Thanks Samantha.

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Samantha F. January 17, 2013 at 11:07 pm

My heart breaks for you and your sweet girl. You all will be in my thoughts! I hope she kicks that infection and has a full recovery. As a mother myself I cannot even imagine the pain you are in watching your baby.

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Wanda McHenry January 17, 2013 at 11:09 pm

Oh sweetie, not only will I be praying, but I’m putting her on the prayer list at Church. This is so ironic because I was just thinking about you today, I even searched my inbox for posts (I’m bad at checking email). God bless and he will take care of your sweet girl!

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Stefany January 17, 2013 at 11:12 pm

Thanks Wanda. I appreciate the prayer chain too. I pray people share this and upcoming posts. The more prayers for Jemma, the better she will get. I believe.

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Terri K (@tkharmonic) January 17, 2013 at 11:20 pm

Though it can’t really compare to what your poor baby is going through, my son was born premature and had a really hard time, to this day I am convinced prayer saved him and you can know that I will be praying for your precious baby and your whole family.

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Stefany January 17, 2013 at 11:23 pm

Terri, our pediatrician says there is medical research that shows prayer makes a difference. That is why I ask for everyone to share. It works. Thanks for yours.

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Staci
Twitter:
January 18, 2013 at 12:40 am

I completely believe in the power of prayer. I have seen it work over and over again. I can only imagine a bit of what you are going through after tough medical issues with my middle daughter. I will pray for Jemma to completely recover… and for you to get rest. My heart breaks seeing your baby like that and I pray her lungs heal quickly.
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MommyJenna January 18, 2013 at 10:11 am

I pray for healing each and every day for Jemma and I pray for God to give you comfort and strength <3 I just wish I could come give you a big hug <3
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Rachel January 18, 2013 at 10:20 am

Praying, praying, praying.
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Randa
Twitter:
January 18, 2013 at 11:01 am

It is exhausting being at the hospital everyday. My little guy was in the NICU for a month and I lived at the Ronald McDonald House. It takes so much out of a person. I hope you’re getting as much rest as you can (I know, it difficult). Just think, Jemma will be much better this time next week :)

Take Care!
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Kirstin January 18, 2013 at 11:05 am

Ever since I read your first post I have been sending prayers in the air about every 10 minutes for you and your family. I cannot imagine the pain of this – my mother had to suffer something similar with my brother who had whooping cough, but I simply can’t imagine how you feel. I do know that your daughter seems strong and is fighting this very hard. Sometimes it is amazing and inspiring to see how such small children can be so brave and powerful. My household and I will continue to pray for you and think of you.

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Shara W January 18, 2013 at 11:15 am

Ive posted this link to Reddit. Its a fairly large community and will hopefully get a whole lot of prayers flowing for you. You and Jemma will be in my thoughts and prayers.

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Sarah Penner January 18, 2013 at 12:45 pm

Praise the Lord for your little fighter! We will continue to pray for healing and strength for her little body and for you and your family as you wait. Our God is the great physician and I know that He is holding her. Praying she continues to improve.. even in baby steps. Know that there are so many women, mothers and families that are taking to the throne room for you!
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Laila January 18, 2013 at 1:21 pm

Lifting Jemma and your family up in prayers today! I wish I had something more profound and comforting to say, just know that I’m praying for your baby girl.
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John Andrews January 18, 2013 at 1:53 pm

Saying a prayer for Jemma. We will keep her in our family’s heart.

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MaryAnn January 18, 2013 at 2:51 pm

I will continue to pray for your sweet Jemma. I too believe in the power of prayer. When my daughter was hospitalized with RSV my current church & many other churches where people knew my family started to pray. My parents also brought in a pin with the virgin Mary in a purple heart as well as a pin of St. Juliana Falconieri the patron Saint of Healing & Comfort with a chronic illness. We pinned both of those to her pillow & I swear that after we did her health got better fast.
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Leanne January 18, 2013 at 5:20 pm

Praying for you and Jemma! What a beautiful baby and a strong little girl – just like her mama!
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Erika P. January 18, 2013 at 6:02 pm

I’m praying for complete healing for Jemma and strength for your family

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Amber Humphries January 18, 2013 at 6:24 pm

I had the brief pleasure of working with you a few years ago promoting a product on your blog before becoming a stay at home mom. I can’t even begin to imagine what you and your family are enduring. I just wanted you to know that you’re not alone in crying, praying, and hoping for your daughter. While I may not really know you or your family I can tell that you are so very strong and that your daughter has that same strength and will continue to get better. My thoughts and prayers are with you.

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Lou Indelicato January 18, 2013 at 7:50 pm

Steph

My prayers are with Jemma but also with you. Each and every day. Hang in there, scream if you must know that you have so many people who are thinking of you and prayiing for Jemma. There are lots of people praying for Jemma and caring for her but you must take care of yourself. Lots of thoughts and prayers.

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Johanna Galles January 18, 2013 at 8:55 pm

Praying for you and your sweet girl

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Jen January 18, 2013 at 9:02 pm

I hope the prayers going up for you and Jemma are giving you peace, as well as healing for her. What an unbelievable ordeal; all of those tubes and monitors and procedures on such a little baby – my heart is breaking for you but your hope and your faith is keeping your strong and I’m so glad for that! I am asking God to give her doctors and nurses wisdom and to give her strength and healing. May He bless and comfort all of you!
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Nan
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January 19, 2013 at 9:25 pm

Praying for you, your family and your sweet girl from my heart.

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