Numbers looking better

>> Thursday, July 2, 2009

Well, first things first... Hollie got to spend some quality time with Kamryn today, for the first time. She had the opportunity to touch her and talk to her. We think she was kind of shocked when she saw her. We tried to prepare her as much as possible, but it's hard to prepare a 7 year old for tubes and alarms, in an infant. Hollie LOVES to read books, but when it was time to read one to Kam, she just wasn't interested. So, she "helped" me with the big words while sitting on my lap. I told her how much it meant to Kamryn that she hear her voice, but Hollie was very shy. She really didn't know what to think. I have to really hand it to Meredith, the Child Life Specialist up there. She really worked with Hollie to help her understand everything that Kamryn is having to endure. She helped Hollie with several craft projects, towards the end of our visit, while I got to spend a little more time with Kamryn. It really was special to Hollie and we truly appreciate the NICU allowing Hollie in to see her little sister. It really will help her to have a better understanding as to why Kamryn can't come home yet.

I have to give a HUGE thank you to our BFG Group at church. They are bringing us meals every other day, and they are so fabulous. Shawn and I aren't able to really eat together, b/c we are on different shifts at the hospital. But, the food is so meaningful to us, and we just couldn't be more thankful. We are so blessed to know such incredible, caring people. We can't wait to get back into our group up at church after things settle down a bit, and continue to learn about and love our Lord, the way He deserves to be loved.

We also want to thank my sister for coming in and spending some quality time with us. She watched Brooke two days in a row for us, so that Shawn and I could go to the hospital together. I can't tell you how meaningful that is to us. Brooke, Kamryn and Hollie love their Auntie J!!! Thanks Jen!

Last night, we also met with Candice and Rob Beal. They are pregnant with a CDH baby and are delivering at Cooks Children's in Fort Worth. She has about 4 more weeks to go at most. But, they drove into Dallas last night to meet Kamryn and get a feel for what it's like to have a CDH baby in the NICU. They were a lovely couple and we wish them the best of luck with Jackson. Their blog link is on the right, titled Baby Beal.

Now onto Kamryn... She had a better day today, and Shawn's frustrations are eased a bit. But, last night, he hit his breaking point and this morning he had had enough. Last night, after we said Goodbye to the Beals, we went back to spend a little more time with Kam. I won't go into the details, b/c it's quite long and boring. But, what I will say is, I've never seen Shawn this upset. This is just so difficult to go through and we literally are helpless when it comes to our daughter's survival. There is NOTHING we can do, except ask as many questions as possible, visit her as often as we can, and PRAY!!! But when she's having one of her bad days, it just sends us over the edge. We just feel so helpless, and I think Shawn just had enough. The frustrations, feeling of helplessness and sadness all settled in at once, and he had a hard time dealing with it all. He's such an analyst and reads into every number, etc. When one number is higher or lower than normal, his mind starts turning and he starts thinking ahead as to what should be done to get that number back to "normal". I think he expects everyone to think the way he thinks. Unfortunately, that's just not the case. But, after spending about 10 hours at the hospital today, he's doing much better. It's hitting us pretty hard that her road is going to be a longer than we expected. Dealing with that is just tough. But, we're dealing with it, day by day. Please pray for Shawn, in hopes that he maintains his patience through this long battle. As all CDH families know, it gets so tough, that you just want to unplug all the tubes, and just take her home. I know I do. Kamryn did better today and her CO2 is back in line. Unfortunately, we have taken some steps back on the vent and had to go up on pressure and rate to get her there. She did start feeds again today so we will see how she tolerates it.

A little about Brooke - She's a fabulous baby. She sleeps well at night and hardly cries when she's upset. She's making this CDH journey as easy as possible for Shawn and I. What a blessing that is, huh?

That's all for now. Much love to all. Thank you all so much for your love and prayers. We can't tell you how much we appreciate it.



Terry July 2, 2009 at 9:57 PM  

I am so amazed by you and Shawn. I'm sorry I haven't been able to come to see you, but I have never stopped praying. I have asked many others to pray too. I love you all very much, keep hanging in there, and we'll all keep celebrating the victories, large and small.


Jaime's World July 2, 2009 at 10:57 PM  

Hey Guys,
I'm sorry you're having a tough time. I truly know how you feel. This journey is awful. It's a constant roller coaster. I remember early on, Jaime's Co2's were in the high 80's even 90's. Right after his first extubation attempt, it was 128. It's so incredibly scary. Eventually the drs. will figure out the right formula for Kamryn and things will go more smoothly.
Hang in there. Your little girl needs all of the positive energy she can get right now! :-) We're getting through this by having no expectations of how things "should" be. We've learned to go with the flow and take each day, sometimes hour, as it comes!
Thinking of you often,

Gabi's Journey July 3, 2009 at 8:45 AM  

It is such a hard ride, even though our Gabi did remarkable well.. I read into everything and kept waiting for the other shoe to drop.. Many thoughts and prayers for your beautiful family. I hope Shawn takes care of himself and tries to breathe a bit easier.. Kam needs him strong!
Thinking of you,

Sue mom to Emily LCDH 1-22-08 July 3, 2009 at 9:07 AM  

I can completely relate to your struggles, especialy Shawn's emotions. I too am a CDH Mom, in Jan of 2008 I moved from my home near Chicago to Cincinnati to give Emily her best chance of life. My husband and two children ages 11 & 9 stayed behind because of work, school, and RSV restrictions which didn't allow the kids in to see their baby sister until she was 2 1/2 months. Mike missed the birth of his daughter because she came 3 days prior to the planned c-section. He and the kids would come out everyother weekend. It was very lonely for me and emotionaly difficult not to have any family support each day. The staff at CCHMC, friends at RMH, and journaling got me through the rough days, hours, minutes. I was obsessed with the numbers even when I didn't exactly understand them, but I knew what was good and what wasn't. You are so lucky to have each other through this journey. Hold on to your love and try not to get ahead of the doctors daily plan. Live each day for Kamyrm and enjoy every moment with her. If the docs and nurses aren't worrying, then don't spend your energy worrying.
Keep the faith. She'll be home with her sisters in God's time.

Candice and Rob Beal July 3, 2009 at 6:50 PM  

I'm still praying!

candice brooke

traci July 6, 2009 at 8:05 AM  

I am so happy that Hollie got to meet Kamryn. Awesome picture of the four of you. Stephanie, you are so photogenic! Can't wait to see you guys on Wednesday! Stay strong. Traci

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