The Crew

The Crew
Christina, Matthew, Joshua and Katie Grace XiHua

Tuesday, March 27, 2012


Do you ever get that feeling of being so scared that you tremble inside and your legs and stomach feel melty?

That is the feeling I get on many occasions over the past few days. Don't worry. I don't have it constantly. Sometimes I have great hope and courage. Many times I am just sitting here reading or on the computer and absolutely nothing is happening. But then, it sweeps through...

Katie Grace Hua Hua will wake up and be so agitated and try to get up or put her hands toward her face (to pull at those tubes) even thought her hands are tied to the sides of the bed, she will kick her little legs in anger, she will look at me with fear in her eyes, and then she will start to try and expel the tube in her throat and her face will turn red, and her body will convulse as she coughs with no sound, and all her stats will go up when they should be down, and down when they should be up, and the dingers will go off.

I try to calm her.
I get that feeling.

Then the nurses will go ask the Dr. if they can give her more sedation because they are in awe when they discuss how much she is on and that she would even be able to awake under such sedation, and I think, you don't know who this little, powerful, scared girl is who would claw her way out of the deepest sedation to get to her mama, and they will get permission, and fill her tiny body with more drugs.

I stand by and watch.
I get that feeling.

I will see her stats are good and her Oxygen stats are at 93 or higher and I will feel joy. Then I will wake up from a nap or come back from a lunch and see her stats at 89 and know she will not get closer to that tube out today.

I will the number up, with all my might, but it doesn't do what I wish.
I get that feeling.

Katie Grace Hua Hua is up and down as each day passes. Today, the Oxygen fed to her is at 90%. It needs to be at 30%-40% for her to take over and in order for them to take her off the vent. They will not be lowering it today, but will tomorrow.

For those of you dear friends praying, let me talk about yesterday's prayers:

The liquid in her lungs was blood mixed with just fluid. It is not Pneumonia! It was most likely due to a small bleed from a chest line that came out and bleed a little on the inside at the opening. The lung has been drained and the Xray is clear! Thank you!!

If you will pray for today:

1)Calm Her Fears:
She is waking up less because she is so sedated, but I would like and the Dr would like too that they will not have to use more sedation and if she does wake up , somehow we can calm her and let her know she is okay. How to do that with a 4 year old that doesn't understand what is going on? I don't know, BUT GOD DOES, and she doesn't need all of these heavy sedatives to this extreme.

2)New Medication is Working -Let's Get Her Off The Nitric Oxide:
The medication they are trying in the drip seems to be lowering her Pulmonary Hypertension pressure. They are trying to get her off the Nitric Oxide throughout today and tonight. That is half the battle with the vent. It is at 10 and we need it at 0.

3)Albuterol is effective, pray for her heart rate:
They gave her some Albuterol in her vent today because she had some "rattling" in her chest. It was very effective (she has used it at home) to open up her airways and brought her Oxygen Sats up to 98%! But caused her heart rate to go up to 160-180 for about 40 min, yikes. Very high and she was jumping out of her bed. Pray she can handle that. She needs those high Sats, but not high heart rate.

God Bless you all!!

Then your light shall break forth like the dawn,
and healing shall spring up quickly.
Isaiah 58:8


  1. Saw your posting on the Heart group Annie- I'm praying for Hua Hua. I used to work in a PICU so I know a little what it's like there for you-- praying that she will be at peace, that she'll be able to come off the vent and the NO. Please keep us updated. hugs to you- i know this has to has to be so hard.

  2. I'm right with you in prayer for little KG. she is Gods powerful, strong, beautiful warrior!! We pray the healing blood of Jesus & His healing oil cover her body, mind & spirit.

  3. Prayed those prayers and will do so again.

  4. Gracious my heart is breaking for you! Hang in there! Once she is off that vent she will make a good turn very, very quickly! Joshua was intubated for 5 days after his surgery...well....first he was intubated for about 4 hours until he extubated himself. Ugh! As hard as it is, make sure those little hands are tied down. Girl, I totally know what you mean about the kicking of the legs and the tears rolling down, is incredibly hard to watch. Keep advocating for her meds and keep an eye on the clock! When it's about 30 minutes before her next dose start asking! As I'm sure you are seeing it sometimes take awhile to get the orders in, find the doctor, etc. I would play some soft music, grab a pillow and hang out at the end of her bed so that when she does wake up she can see you right away and you can rub those little legs and help to soothe her. Everything gets SO much better once that tube is out! Hang in there!!! Hugs!!!!

  5. Praying!!!! I posted on my blog for everyone i know to pray as well:) We are storming the gates of heaven for this little peanut! Love to you all!

  6. Annie, We are praying for Katie Grace, and we will continue to do so. We are also praying for your family to stay strong through all of this. God's richest blessings on all of you.

  7. If you can get some very gentle praise music and play it for her, it may help.It worked very well for my nephew that was very terrified in the hospital. I'm praying for your little one and you. I know this is so hard.

  8. I found your blog from somebody else. I have read all of your posts and my heart goes out to you and your family. I have been clicking all day to see if there was an update. Finally there is. I hope and pray that your sweet little girl is soon doing well enough to come off of all those tubes, and medications. Maybe a favorite stuffed animal will make her feel better, if she's allowed. I know my daughter loves her stuffed animals.

  9. Hi Annie! This is Kelly Nigro, the Elem Guidance Counselor at DSA! i am out on Maternity Leave, so I was not aware of the surgery! My heart goes out to you, Joshua, Katie and your entire family. I am praying for a safe and quick recovery. If there is anything we can do, please don't hesitate to ask!!!!

  10. Hi Annie! This is Kelly, the Elem Guidance Counselor at DSA. I am so sorry to hear about Katie and her struggle! I am out on maternity leave, so I was not aware of her recent surgery! I am praying for her and for your entire family. Pleas let me know if there is anything I can do! God Bless!

  11. Thankyou for such a specific list of ways we can pray Annie.

    I am praying throughout the day, my friend, faithfully 'standing' next to you lifting her up.

    I am not fully understanding all the 'heart related needs' in your post here, but with Spina Bifida, I do feel your momma's heart with all those tubes and anguish. Thankyou for taking to time to help those of us who don't have Heart Babies understand what is going on.

    One of Katie's Many Faithful Z Aunties,

  12. Continuing to pray, Annie! God is able!

  13. Praying , praying and praying some more!!!

  14. I am praying. Kathie left a link at my blog. If it is OK, I will add a new post with a link too. Let me know at cljjs (at) yahoo (dot) com.

    From one heart Momma to another, here is a REALLY LARGE virtual hug. I am so sorry she is struggling, but I want to share with you some words a nurse gave me when we were in the hospital after our DD's open-heart surgery:

    "Slow and steady wins the race."

    I know you would like it a bit more steady (and I'm praying for that too), but we'll take the slow as long as she is making ever so slight steps. It seems like from today's report she is. PLEASE also consider a "pharmacy consult" if you haven't done one already; this was a lifesaver for us. One of the pain meds our DD was on made her C-R-A-Z-Y. After we altered that, she was like a different child. Another med she was on made her very nauseous. Probably more advice than you wanted LOL!, but I just wish I could do more. I will pray and come back to check (and post if that is OK with you).

    In Christ, Leslie (blog is on my profile under "web page")

  15. Still praying. That is good news about the albuterol, my son Christian and my son Logan have frequently needed breathing treatments(Logan has grown out of it) but I know the albuterol can cause the heart to race. The good news is there are other drugs that work like it that don't have that side effect.

  16. Oh Annie I am so sorry... I did not know you were going thru all of this. I will be keeping your precious Katie Grace close in prayer and your mama heart too!

    Your post just broke my heart for all that you and Katie Grace are enduring. I can't imagine. :(

    Be strong my sweet friend....each day will get a bit easier and your sweet girl will soon be home! HUGS!!!!!

    Psalm 31:24 “Be of good courage, and He shall strengthen your heart, all ye that hope in the LORD.”

    Love and blessings,

  17. Great news that she does not have pneumonia ! Praising God for this.
    I know this is so hard. I wish I could visit you and bring your family lots of good food and hugs. Seeing as I can't ( and boy do I wish I could) please know we are praying for Katie Grace to get off the vent and NO. Chuck and I are both pharmacists at the hospital. Keep advocating for KG's meds and communicating with the doctors/nurses your concerns as someone commented already.

  18. Dear Annie, I have not been to your blog before but Robin asked for prayers for you little girl and I followed the link. Our little spicy girlie had open heart surgery on March 15th and is doing well except for the fluid around her heart. We find out tomorrow if she has to be readmitted. All the lasix she's been taking hasn't seemed to help. When she had her spinal cord surgery in January, she had to be sedated for 2 days as she had to lay flat on her back. Well our little warrior sat up...ON sedation. They tied her arms to the crib. She pulled and screamed and hollered and halucinated. It was really rough. But I've since come to appreciate that fighting spirit the Lord has blessed her with. Seems they just couldn't sedate a little 28 pound girl from China with a warrior spirit!! :) God knew she would need that spunk. She's been through so much. Praying for your little warrior right now. Blessings, Holly in NC

  19. Sending prayers for Hua Hua and for you this night. Wishing you both peace as you move to recovery.

  20. Praying for you and your sweet girl:)

  21. I have mentioned before that we went through this with our now 12 year old when she was 29 months and home from China just one month. Do not be scared or discouraged...I know, I know...this is your sweet precious daughter but this is not uncommon for ups and downs after heart surgery. She has demonstrated time and again what a little warrior she is. God has her in the palm of his hand. Everyone is praying, just keep staying close to your little one, so she feels safe and secure that her Mama is there. I just wish I could give you a hug!


  22. Sending prayers from the other side of the world Annie to you, Hua Hua and the whole family that she will be fine soon and all this will be over!! God Bless you all!


Many hungry children near the boarder of Myanmar and Thailand-click on photo