Holding on to hope....

>> Saturday, June 27, 2009

First, let me apologize for not posting yesterday. We have invited all of you into our lives and know so many of you are walking with us daily as best you can from a far. I fell down on my responsibility to all of you yesterday by not posting and for that I apologize. I made myself a promise to not leave you all hanging and I won't going forward.

I didn't post anything yesterday because I am honestly a bit overwhelmed right now. Our little girl has been so strong, but she has stalled out on progress. The medical team has been trying different strategies to get over this hump, but haven't had success. I asked them today, maybe begged is a more appropriate word, to just chill out on jacking with her. They wanted to try feeding today. I appreciate that the longer we wait to feed, the harder it will be for her to feed. I get that, but I also know that she is stressed right now and if she rejects the feeding, it will only add to her unstable condition. I haven't interjected on any strategy up to this point, but I couldn't hold back today. I begged to just let my baby rest today and get back on track in the right direction and I think he saw my pain and agreed.

Kamryn isn't as sedated as she has been in the past. This is good to have her moving around as it will help her get rid of some of the fluid and work the muscles she will need to breathe on her own one day. At the same time, she becomes more aware of the tubes down her throat. She wants them out so badly. She tugs at them and looks at me for help. I'm her dad and am supposed to protect her. I am supposed to take the pain and discomfort away and I want to just pull them out. I feel like I am letting her down because I won't help her. When she looks right at me, it feels like she is asking why her daddy won't lift his hand to get her out of there. I spent most of my time explaining to her why I couldn't help and we need her to keep fighting. It was the first day I've shed a tear since all of this started. I'm tired and the journey has only just begun.

Let me assure everyone that we haven't really taken steps backwards, we are just not moving forward really. We're just stuck. There is some good news to report. She has had a couple more bowel movements. Her heart ECHO yesterday was completely normal and this was the first ECHO that showed her pulmonary pressure has come down. She is off her dopamine which means she is holding her blood pressure steady all by herself. We have though been moved out of the isolation room which I am not crazy about.

So the gameplan today is to let her rest, try to get her numbers back in line, and then tomorrow see where we go from here.

We are still eating the unbelievable food that our friend Jackie made for us when she came to visit for a few days and help out with EVERYTHING! Last night our neighbors came over with a small pink bucket and inside were gift cards to different places that looked like flowers coming out of the bucket. We were just stunned with their generosity. Our good friends Scott and Amanda are in town to visit and they took Hollie to the water park today with their daughter Jaycee. We are going to hang out with them tonight at the house and we are really looking forward to that. Next week our Sunday school class will be coming by to bring us food and it will be great visiting with them each night. We really can't get over the kindness and generosity of our friends and family. They have just been amazing to us. It's overwhelming to receive this much support and we would be a disaster right now without all of it.

We continue to hold out hope that Kamryn works this out and gets over the hump very soon. I hope I have a great report for everyone tomorrow.

Thank you for the continued support and prayers for our little princess!

Shawn

9 comments:

Burt and Christy Michel June 27, 2009 at 5:16 PM  

Stay strong !! Kamryn will show you just how strong she is. She will amaze you on her journey with cdh. I to felt helpless watching my child lye there when you want so badly to hold and comfort them. You will find the strength to make it through.
Praying for Kamryn and your family daily.
Christy Michel

Tracy Meats June 27, 2009 at 5:45 PM  

Always stay strong and positive for your princess!! She has been through so much so fast and overall has handled things wonderfully....she just needs to rest, for she just had a major operation. Baby steps will win the race!! There will be days with no progress, but stable days is what is important. This is the hardest thing to watch your baby go through. Now that she is moving around and looking at you, it is very hard. Hold her hand and tell her you are right there with her, fighting every step of the way with her. Keep fighting Kamryn!! Starting feeds may just help her start getting stronger. Praying for strength for your little girl. Hope you see some baby steps in the right direction...good and stable days!!

Much love to you Stephanie and Shawn! Tracy

Kenny and Jennifer Miller June 27, 2009 at 6:28 PM  

These are really hard days...I remember them. But this, too, shall pass and Kamryn will be home very soon where she belongs. Stay strong. Praying for you all.

Jen

Jonathan and Sarah June 27, 2009 at 7:56 PM  

Oh how I remember our little guy starting to wake from sedation & tugging at those tubes...it will pass & she will never remember. We are praying for little Kamryn! And her wonderful parents & sisters! :)

Maxton's Mommy June 27, 2009 at 10:32 PM  

I think you are right and Kamryn just needed a little rest for all the work she is doing. I have faith and hope that she will be back stepping forward tomorrow. :-) Hang in there guys, you are doing great and of course, so it she! Much love and many prayers,

Ashley

game on June 27, 2009 at 11:01 PM  

Wow, Shawn! Those words are just so raw and real... Thank you so much for sharing your soul with us. Your words sound so familiar...so much like what I imagine God says to us as we struggle through our own trials. He's here with us, holding our hands, but we are here to struggle through them..as you are there to hold her hand and guide her struggle through. Thank you so much for allowing me to be a part of your beautiful family the last few days. I wouldn't have traded them for anything. Big hugs and kisses to everyone!
Jackie

Jaime's World June 27, 2009 at 11:29 PM  

Hey guys,
I'm so sorry you've hit a holding pattern. I must let you know that we've all been there. It's probably the most difficult time in this journey. Then, you have a great day, rejoicing while walking on egg shells waiting for the next bomb shell, it stinks! However, it's part of the journey and Kamryn will show you just how strong she is. She probably does need a day of rest. We've found that the drs. get really excited when the babies are doing well and want to go forward, yet, the babies are truly on their own schedule and don't always take to so many changes!
Here's hoping that a little R & R for all will bring better days ahead!
God Bless,
Love,
Sheryl

kmm0305 June 28, 2009 at 1:37 AM  

Praying that some rest will get her back on the up-swing. You are the parent and you will get to know her best. It is good that you feel comfortable to talk to the Dr's about the options you may have as she makes changes and they make changes. What may look like a good idea medically may not be right for her at that exact time; everything in her own time. Keeping your family in our thoughts.

Kristyn

brad.kellie.carter.lucy June 29, 2009 at 7:38 PM  

I remember these emotions. I think one of our hardest days was when Carter was on ECMO and he was just beginning to wake up and look around. He opened his eyes and looked at us like he was pleading for help and then began to cry. He was silent b/c of all the tubes, but he was crying nonetheless and to not be able to do ANYTHING, even pick him up or touch him, was a horrible thing for a parent. BUT...it got better and before we knew it, he was home. You will get there, too. Thank you for sharing your feelings and your honesty. This blog will be a gift to your daughters that they will cherish forever. Hang in there!

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