Friday, November 9, 2012

Being Still........

I know you all want an update but I hate writing something so depressing.  I have been waiting the past couple days for something good to happen so that I would have something good to say here.  Things just seem to be getting worse.  It has been the hardest week & day yet. And now it is the weekend, Friday night, the night I dread because it seems like she doesn't get stellar care on the weekends.  It seems like they drug her up to get her by til Monday.  Since the dr's rotated last week we do not feel like we have been getting the care that she needs.  It almost seems like they are so busy they do not have enough time for her.  I will admit, some of that feeling could be because she has took a turn for the worse and I am just super stressed/depressed/scared.  Enough about me though.  Here is what I can tell you about Sunni....

As you already know she started swelling Monday.  Each day she has gotten a little worse with most of the swelling in her head.  She does not look like herself, or even normal for that matter, at all.  Her head is just as big or bigger than her body.  She has gained 2 pounds this week from fluid.  I do not want to post a picture because I do not want anyone to see her like that.  It is hard to look at.  Her hair is falling out by the handfuls because of protein deficiency, they say.

They had to go up several times on her meds and the vent.  We got a call at 7am this morning (first call since she has been born other than the surgery updates) letting us know her blood gasses were terrible, she had a miserable morning, and they had to go up on the vent.  I was so scared!

The GI results came back and most of the stuff they gave her to see where it traveled (seen by xray) had to be pumped from her stomach that night because she kept vomiting and not much of it had gone anywhere.  We found out that a very small amount traveled into the bowels.  All we have heard since then is that her bowels might not be "awake" for one reason or another.  They were talking about bypassing her stomach and going straight into her small intestine (I think) to feed her.  This might require a surgical procedure but we are not sure right now.  I think they are kind of waiting to see if she stabilizes before further discussing that.

Her pleural effusion is a different story.  We get mixed answers all day depending who we talk to.  The only facts we do know is that she is getting very little drainage from either tube (jp or chest).  Whether they are working correctly, we do not know.  Mystery!

She looks aweful.  I have been in tears most of the day.  It is so hard to see your baby like that.  The drs do not really seem to be concerned about anything.  What worried me was when she finally opened her eyes this evening she did not look around like she normally does.  She stared straight up and did not move her eyes to your voice.  She has ALWAYS done that.  It was like she was not really there.  I hope it is the drugs.  I just want my baby to feel better.

Sorry no pics this time.  I promise to post some as soon as the swelling goes down.  Thank you all for loving us and loving Sunni. <3

"The LORD will fight for you; you need only to be still"


  1. My heart aches for you. I am begging the Lord as we speak to heal baby Sunni! Every time my phone rang for 3.5 months I dreaded looking at the screen in fear of it being the hospital. The few times we did get calls, it was like having my heart ripped out. I also hated the doctors rotating. It did have its advantages sometimes but it always felt like each doctor has their own "thing" that is most important and the fous... So frustratin!!
    Please Lord heal this little girl. Give her strength to fight as well as her parents!!

  2. I am so sorry. This is such a hard time for you. I am praying for healing and for peace for you. I know you are so weary and so worried. Praying for your sweet Sunni every day.
    Please know that any of your CDH friends are here to listen and support you any time that you need. Prayers...prayers...prayers.

  3. Praying for you right now!!!! It sucks seeing her look that way. I felt so distant in those times. Afraid to face what was ahead. Afraid it was over. Afraid of the phone, afraid of everything. I never understood why doctors weren't concerned but we were. Praying that the Lord lifts you above those moments. That he can carry you in confidence and wisdom and strength. That even though its hard to see her look that way, you will be given grace to stay strong over all that looks and feels and is so bad. I am wearing my Esther CDH shirt this morning in a race. I will be praying for you the whole time!!!!

  4. We are not a CDH family, but we have been following your journey for months. Please know that just like we do Wyatt, Jude, and Esther's Family, we are lifting precious Sunni up to our Lord. May He help all of you through this enormous trial in life and carry you during times of uncertainty and fear. May He bring her through this setback with flying colors. Much love and very many prayers being sent your way, even moreso during these incredibly difficult

  5. Many prayers arising for Sunni and her family. I pray that God will surround her and her entire family with His loving arms and grant to all of you peace and comfort and strength. May God bless each of you and hold Sunni in the palm of His hand.

  6. Whitney, I am so sorry. This is so so hard. I remember seeing Samuel so swollen he was unrecognizable. I didn't share pictures either. She is in there, Mama. Hold on tight.

    Do you have a primary physician in ICU? At about this time, someone suggested to us that Samuel should have a primary - someone who was always in the loop, even when off service, to provide continuity of care. I encourage you to speak with your favourite charge nurse and ask which docs might be available and willing and how best to make it happen. The shift changes are hard when you are a long-timer in the ICU. You need someone who is (a) connected with you and listening to your mama knowing and (b) invested in following Sunni's care. We had a Primary Intensivist AND a Primary Anesthesiologist (for dealing with medication/sedation withdrawal). It helped us a lot.

    Sending prayers.

  7. I am so sorry you are going through this. My nephew is at day 9 of his CDH fight. Although I know all cases are different I have been reading blogs to learn as much as I can. I am so sorry you are going through a hard time right now. I can only encourage you to ask questions and get answers. If you feel you need to speak with a doctor that is your right. You shouldn't be scared and not have any answers. If your nurses aren't helping ask to speak to the doctor. Write down your questions and concerns and go down the list. Feeling as though they are mediating your child to get through the weekend is not okay. I hope Sunni is having a better day today. I will be thinking of you. Stay strong. A Momma intuition is a wonderful gift, listen to it.

  8. As a PICU nurse, if you are concerned about your daughter and feel like the doctor's are not addressing those concerns, I would see if I could talk to a patient care representative (or something similar depending on hospital). As a mother, your role is to advocate for your daughter. I realize doctor's can be extremely intimidating, but this is your daughter's life and she needs the best care possible.