Tuesday, March 10, 2009

Rough afternoon

Before I start, Gracie is fine, in fact other than the infection she is doing quite well. They did try to wean her high flow down to 2 1/2 liters, but she couldn't maintain her sats and eventually went back up to 6 liters of high flow. Grace also had more growth on her blood cultures drawn two days ago, its a different infection than what grew out the other day, but because of the craziness of the PICU I was unable to find out if this infection is treated with the antibiotics she is currently on or if she needs a different one.

As for the roughness of the day---around 4pm it was announced to our nurse that she would be getting a new admit, a newborn baby with HLHS. Supposedly this baby was going to be there at 4pm but didn't arrive until 5pm because of complications. Now it isn't my place to share what was going on and it wasn't like I was trying to ease drop on what was going on, but really there was no way of not knowing. Basically this baby was coding and we were left in our little corner with no where to go and frankly I didn't feel like I could because Grace would have been left alone and I don't know if she wouldn't have gotten lost in the commotion.

Anyways all I could do was sit there and feel like crying for what this poor baby and her family were going through. I watched Gracie sleep and was so grateful for her and where she is but still couldn't help but feel frustrated. I really feel so lost right now, I yearn for faith and the ability to trust Heavenly Father, but it is so hard. I feel if I don't have enough faith, trust, and hope I'm not giving Grace what is needed to receive all the power and strength that comes from our Father in Heaven and His Son. But at the same time, how can I not feel lost and betrayed to see so many babies and children suffer more in their little lives than the majority of adults will ever experience and even lose their fight.

I have always had an awful fear and anxiety about death and dying, I literally have anxiety attacks regularly because of it. But to see these little ones lose their fight even before they know what is going on depresses me so. Now I know that life doesn't end with death, that these little ones are pure and perfect, that loved ones will see them again, but how does one stop from losing their faith and from becoming cynical when they are surrounded by so much sorrow and heartache?

Basically we need to get Gracie home so I can focus on her and not her illness or the illness of so many other precious little ones.

12 comments:

Kristine said...

So sorry you had to witness that today. Children's hospitals are SO sad. I also have panic attacks (seriously) since Katie's illness. Aren't they AWFUL!!!

SO glad that Gracie is progressing well! Such a cutie!

aj said...

Oh man, I'm sorry . . . that must have been heart breaking for you!! You know that family's pain; you've been there yourself so many times, hoping against all common sense that your baby will make it.

And yet she's here. She's your little miracle, and even though others may not receive the miracles you have, they will be blessed in other ways - one day - perhaps not today. Today may be the biggest trial of that family's life.

I know what you mean about losing faith. But I know even more about the power of faith, the true and real love of God. My heart goes out to this sweet family. How very sad . . .

Nic and Ashley Haws said...

What a difficult day. I'm so sorry. You are so good to continue forward.

Continue talking with Heavenly Father. He will never leave you. I have a strong testimony of it.

We are praying for you.

Terri and Fam said...

I have been quietly following and praying for you and your family for some time now. Our son is one that fought bravely and is now resting in the arms of Jesus.

It is terrifying to face death day in and day out. It is much like a war zone in the ICU's especially a heart center ICU. Your feelings are very natural.

Each day as you walk into the ICU you are faced with a reality so harsh it hurts. Your faith is right where it needs to be and no where else.

These little ones that leave us are home with God. It hurts the families and us terribly but they are in a much better place. The families left behind feel lost and lonely but God pours out strength beyond measure for us to get through this.

Just like he is pouring out his strength in you as you sit beside your daughter and fight each day for new grace and faith to watch her go through this time of trial. God is getting you through and will continue. You are doing great.

Praying for you and for Grace. Praying that this infection clears quickly so that Grace can come home.

Terri

Kimberly said...

Dee-when can I come visit you? You have been on my mind a lot! I would be more than happy to sit with Grace if you just need a little break from the PICU. Your family is in my prayers and the prayers of many others.

We do not know if we will ever be able to endure the trails that are before us. But Deanna, you are being blessed with strength beyond your own. I know that my experiences are totally different than yours, but I know how it feels to be beyond despair. Wondering if this will ever pass. But continue to rely on the Lord. That is where you get your strength to keep moving forward.

I will pray even more for you that Gracie will be able to come home soon. That her infections will clear up. That you can get your sanity back!

All my love!
Kim
Please call me when you get a chance or drop me an email so I can come visit you!

Douglas Lai said...

Oh Deanna I hope you get out of there soon so that your life can get some of its "normalcy" back, and the only little baby you have to worry about is your own.
Thinking of you always,
Erica

Melanie said...

Just continue to hang in there. My little guy, Peyton, was in the PICU for 5 weeks following his Glenn...and then for 1 week on the floor. We had lots of ups and downs and he ended up with lots of infections and pneumonia. We continue to follow little Gracie's story and we continue to pray for her and all the other little heart kiddos out there.

Melanie
mom to Peyton - HLHS
www.fourpages.blogspot.com

Kyle and Alli said...

I just wanted to post a quick comment. The little one you witnessed crashing last night was sweet baby Avery. Her mom and I have bonded over the last few months as we both were due days apart with HLHS babies. I will be induced next week with a little boy we will name Grant and though I pray that little Grace will be home by then, we may get to meet in the PICU. I am sure that the PICU is full of major emotions and I feel for you having to watch Leah and Steve's sweet newborn die last night with the fear that life is very uncertain. I feel much of your anxiety. We will pray that Grace gets better and gets to go home, but if not, I will look forward to saying hello in the flesh next week.

Alli Hicken

Hilary said...

Oh Deanna, I just want to give you a big huge hug. I am so sorry you are struggling right now. It is ok to feel the way you do, you do not need to have one bit of guilt. That is one of the awesome things about our Savior is he knows all of our fears and weeknesses and he still loves us unconditionally. Hang in there. Sending our love and prayers!

Jon said...

Hey Deanna, this is Jon, Kim's friend. Kim keeps me updated on you guys. I just wanted you to know that I'm praying for Grace, and for you guys, and for her medical staff.

I sometimes wonder how I would do if I was ever given a huge trial or challenge similar to what you have been given. I hope that I could do as well as you have done. I also like to think about how other people have handled things and see what they did that let their trials be something that built them up instead of breaking them.

One of my favorite scriptures is from Job 13:15. "Though he slay me, yet will I trust in him." That just really stands out to me - how he must have seen the gospel as the important thing, rather than what specific trials he went through. I think he must have been saying "I know that God loves me and knows everything, and that whatever He does or allows to happen to me must be because that's what He knows will be best in the long run, even if it's unbelievably difficult for now. So I will trust Him, even if I can't see the whole picture right now, and even if this gets even worse than it already is - even if it takes my very life." To have that kind of perspective and trust is, to me, a brilliant example that I hope I can follow in all my trials.

I'm glad there is prayer and priesthood and the faith and love of family and friends when there are times like these. And most of all a loving Heavenly Father who knows so well what you go through. I will keep praying that if it's best in His wisdom that Grace will indeed be able to make it through this all right in the end. And I pray that you will all have the strength, peace, and courage not only to be all right if her time is shorter than we want, but really that you'll be blessed and strengthened every day no matter what happens. I can only imagine what it must be like to be there for you. Hang in there, and keep faith and hope.

jules said...

Jason and Deanna.
It has been too long. We miss you. So sorry to read about your "rough afternoon".
I know your life is very full right now however if possible we would love to get in touch.
We are praying that little Gracie can continue to be the little fighter she is and fight off the infection.
Love you so,
Jules

Stacy said...

Deanna, You have such an insight with your words. We have all been on edge with all the heartache going on. Little angel Gracie's passing was tramatic on my entire family. Our hearts are with her family. We have been following your little miracle and jump up and down with every hurdle she jumps. Our little friend Mercydez is struggling and the same questions cross my mind that do yours. Why? Let me suffer, not the innocent. I am far from it. I think it is completly natural for a mother surrounded by the unknown, death, hurt, and pain to let is affect her. If anything it shows was a great person you are. Please know we are thinking of you and I KNOW that Gracie will do better at home than there! Love, Stacy (mom to Corbin)