Amazing progress!!

Each day we get more nervous that we are going to hit another brick wall with her progress, but each day Kamryn just amazes us. They have focused on her rate (number of breaths the vent pushes per minute) and the progress is unreal. To put it in perspective, for the first 21 days or so her rate stayed between 50 and 60. Over the past few days, she has managed to allow it to come down from 48 to 24. Tonight, they plan to wean her down to 20 which is our loose target on that setting before she can be extubated!

Her pressure has been in the low twenties for a number of days now while they work on the rate. Her highest pressure has been 30 and tonight she is down to 20. She doesn't have far to go to hit the target of 15 - 18 before she is extubated.

She has done all of this over roughly a week. I was able to see her chest x-ray yesterday and she doesn't look like the same baby from just three days prior. You can actually see her left lung now and it looks to be fully engaged in the air exchange process! Her right lung looks great and her heart has shifted more to the left. It's like she just flipped a switch and said she is ready to get on with things. It's just amazing and we really are on top of the world right now with how well she is doing.

I won't make any guesses as far as when she will be off the vent, but if she keeps going at this rate, it can't be too many more days. We are praying that she doesn't hit a brick wall.

Monica, one of her primary nurses put this together for us and I just had to post it.


Aren't her nurses amazing! It's been 29 days and her nurses have helped us keep it together and I just can't say enough about them!

We have to thank Allison from our Sunday school class who was just amazing today! She watch Hollie and Brooke and made us dinner and gave Stef and I the ability to be up at the hospital together today at the same time. Our friends are generous beyond words!

Well, that's it for tonight. Everything is going better than we could have expected. I hope to be able to tell you all that she is successfully down to a rate of 20 tomorrow!

Take care,
Shawn

Read more...

Baby Avery

Kamryn had a great day and I have updated her condition over on the right hand side of the blog under current condition.

While I would love to talk about Kamryn's progress today, tonight's post and focus needs to be about an amazing family and courageous girl, Baby Avery. I talked the other day about how this experience has taught us so much about how precious life is and that lesson is even more clear tonight. Sometime this evening, Shane and Carissa are going to make what I believe is the most difficult decision any parent could possibly make. They are going to stop all of Avery's assistance and let her go.

Stef and I have imagined that day as you have to face that possibility with CDH, but even with Kamryn fighting for her life, I can't truly understand or appreciate what these two amazing people are going through. Shane and Carissa have been such an inspiration to us and have taught us so much over the past few months and all of this just seems so unfair. I'm more angry right now than anything and just can't believe how cruel this condition really is and how it can take so many precious babies from the most amazing parents. What these babies endure at such a young age is heartbreaking and inspirational at the same time.

I would be lying if I didn't feel incredibly guilty that we are celebrating small wins these last few days when I know that Shane and Carissa and other parents are struggling to find an answer for their child's deteriorating state. I just don't understand why all of this has to happen and what purpose it serves. I know that Shane and Carissa are struggling with this question even more than I am right now and wish I had an answer for them to ease their pain. I ask that if you only post one time ever on these blogs, that you will go over to Baby Avery's blog (Keeping up with the Keirseys) and send them a message. Trust me, it means so much to the families going through this.

Shane and Carissa, I am so very sorry that Avery's journey with CDH is ending like this. I don't have the words to make it better, but you need to know that you all and Baby Avery are in our thoughts and prayers. You have been an inspiration to so many people and Baby Avery has touched so many lives. We are just so sorry.


Shawn and Stephanie

Read more...

Holding Kamryn

Today, one of my friends from our BFG Group at church signed up to watch Hollie and Brooke, while I got to spend time with Kamryn at the hospital with Shawn. It's meaningful to me to be up there with Shawn, so that I can hear the questions he asks the doctors. I feel so comforted when we're there at the same time, for some reason. Well, when we got there, the person at the front desk said that we couldn't go back right then, b/c they were still rounding on Kamryn. We had to wait in the waiting room. That was a little frustrating, and was a first for us, but we did. While we were waiting, Traci, one of Kamryn's FABULOUS Primary nurses came out to give us an anniversary card, and to also let us know that I will get to hold Kamryn today. I think my heart skipped a beat when I heard that news. I was just over the moon. Below, is a picture of the anniversary card that the nurses helped Kamryn make. See her footprints? So special!!!



So, after we were able to go in to see Kamryn, we had to wait about 20 more minutes for me to hold her. That took FOREVER!!! But, finally, on Kamryn's 26th day of life, I finally got to hold my sweet baby girl.







I can't even begin to describe the feeling of holding her. She woke up a little bit right after they moved her to my arms, and then she fell right back to sleep. I think I got to hold her for about an hour. It was pure heaven!!! She started getting agitated towards the end, and ended up messing in her diaper. I couldn't have been more pleased about that as well. It was also neat seeing her face. She looks like a totally different baby, and I must say, she doesn't look a thing like Brooke. Her face is longer than Brooke's, and she has less hair. They are definitely fraternal twins! I didn't want to put her down. This was the best feeling I've had in such a long time. I'm truly thankful to Kamryn's nurse, Traci for campaigning for me to get to hold Kami. She was so patient with me, and really went out of her way so that I could have this special moment. Thank you so much Traci!!!

I also want to give a HUGE thank you to Kayla Whiddon. She watched both Hollie and Brooke today, along with her 3 children (one is a 3 month old). She also managed to cook us dinner and teach Hollie and her two daughters, Madison and Macy, how to sew. Oh, and their house is on the market, and someone called to see it while she was in the midst of all of this. Talk about Wonder Woman! Kayla, you are a true friend, and I'm so glad to know you! Thank you so much for everything you have done for us.

Kamryn's carbon this afternoon was down to 56, and her rate has moved down to 38. She is also now up to 41ml/hour of food every three hours! This is so awesome and we are so proud of our little fighter. She wants to come home so bad and we can't wait to get her home! She is definitely making great progress and continues to make her parents so proud!

Stephanie

Read more...

Busy day

Twelve years ago today we would have never thought that our 12th anniversary would be spent in the NICU. It was. We also would have never dreamed that we would be blessed with 3 unbelievable children who inspire us and teach us daily about what's really important in life. On this 12th anniversary of our marriage, we have so much to be thankful for and although we are going through one of life's many challenges right now, we know we are truly blessed. We don't know why we were chosen to walk this journey, but we are embracing it, learning from it, and understanding more and more each day how precious life, family, and friends really are.

Speaking of friends, we had a great dinner last night with Angel and Avery. I think we would honestly lose it if we didn't have these brief breaks with friends from time to time to distract us. I must say, Avery made the most incredible shrimp for us!!!!

Courtney and Matt came to see us and Kamryn which was great for us, but surely tough on them to re-live everything. Their son Beckett made it through his CDH journey in the same NICU as Kamryn is in. It was wonderful seeing how good Beckett is doing. Besides his scar, you wouldn't know he ever had anything wrong with him. It was so nice of them to come down and see Kamryn and we appreciate them so much.

Two of our best friends, Matt and Sheryl, also made the trip down to see Kamryn and brought the twins some great gifts. We haven't spent time with them in so long and while we wished it wasn't in the NICU, it was wonderful seeing them.

Kamryn is kicking some serious CDH butt right now and she is telling us to bring it on! After taking a break, she is ready for another round of weaning and is doing so well. They are actually taking her rate down in increments of 2 now instead of one and she has made it from 48 to 44 on rate in two days. Her CO2 remains in the 60's and her feeds are up to 31ml/hr every 3 hours. That's about 8 ounces in a day and she is having no problem whatsoever with it. The swelling is completely gone now and she was more alert and active than I think I have seen her any other day. Traci was there today (Traci is just amazing and I could write entire blog entry on each of our primary nurses, Traci, Monica, Gretchen, and Tamara. Not sure how we got so lucky to have these four amazing people in our lives.), and let Stephanie lift Kamryn off the bed and cradle her. Stef was on top of the world. The plan is to continue weaning her settings until Kamryn tells us to give her a break.

Stef and I were able to sit through the rounds on Kamryn today and it meant so much to hear them go through where Kamryn is at. Dr. Wyckoff is the attending physician this weekend for Kamryn and she is just amazing. For the first time, we were able to celebrate success with a doctor. It was one of the highlights of the day. Looking back at it, it was so small I guess, but she just looked at us with a big smile and said "Kamryn is doing really good." What we heard was, Kamryn isn't out of the woods and I don't know how this is going to end, but right now your kid is doing really well, we intend on doing everything possible to keep it going like this, and you can smile and celebrate her success. She's just an amazing doctor and communicator. She made our day!

Honestly, we had a terrific anniversary today and we even found time to have a nice, "romantic" dinner at On the Border thanks to my mom watching Brooke and Hollie :)

Have a great evening everyone,
Shawn

Read more...

Time to move forward

Looks like Kamryn did just need a couple days to catch up with her new settings and is telling us she is ready to move forward with another decrease in vent assistance. Tomorrow at 2:00am they plan to wean her rate down from 48 to 46 and will take a blood gas at 4:00am to see how she did. The decision was made to drop the rate because her gas this afternoon showed CO2 down to 64. Thanks Emma for calling me to let me know! Emma isn't one of her primary nurses, but has had numerous shifts with her and is just fantastic. She showed me today how I could put my hand under her back to give Kamryn the feeling that she was being held. She became agitated a couple of times when I was there and doing this calmed her right down.

Kamryn is still doing well with her feeding and I think they are almost ready to increase that also. We were also asked to bring her some outfits! She is wearing clothes now. I know that sounds like no big deal, but the things we take for granted with Brooke are huge milestones with Kamryn. Every little thing is one step closer to getting past this situation.

Angel and Avery, our next door neighbors, invited us over for dinner tonight so we are about to head that way. They are great friends and spending time with them helps us tremendously to get our minds off everything for a little while.

That's about it for today. We are thrilled and pray she handles this wean and then just one more step on her pressure from 21 to 20 and we will be back to where she was before her surgery and ready to truly make it into new territory on the vent since she was born. We are just so optimistic and hopeful right now.

I will be sure to let you all know in the morning how she handled the change. Take care,

Shawn

Read more...

Before we post about Kamryn, there is another baby that needs our thoughts and prayers. The Jackson Beal Baby is due in just a couple of weeks. Candice, the mom, had her weekly doctor's appointment yesterday, and were told that everything is up in Jackson's chest, including the entire liver. Candice and Rob are very upset by this news, but still hopeful. Please, please, please pray for them, and visit their blog on the right.

Well, this week, my mom and sister were in town visiting. They were a huge help by watching Brooke and Hollie, while I drove up to the hospital, to spend as much time with Kamryn as possible. It truly helped me out tremendously, and I can't thank them both enough for all their hard work with the children. Brooke is starting to get a little cranky (gas pains, possibly colic), so she's starting to get comfortable telling everyone about it. So, I truly appreciate them watching after her while I was gone. Mom also treated all of us (except Brooke) to pedicures on Wednesday, so that was a nice escape. Brooke went with us and slept the entire time. Thank you mom, for the nice treat!

My friend Paige met me up at the hospital this afternoon, so she could meet Kamryn. She brought her some cute socks, hats and a cute little caterpillar to hang from above to look at. Thank you so much for being so thoughtful, Paige. Kamryn will look adorable in her new accessories.

Kamryn is still holding her own. Her 4:00 gas came back with her Carbon at 71. So, they are just going to leave her alone and see what the 4:00am gas brings us. She was so cute today. They dressed her in clothes for the first time and when I walked in, she was wearing a cute little sleep sack that said "Little Princess" on it. Oh, I just wanted to scoop her up and hold her so bad. I was telling my mom this afternoon that I just want to hold her up, like I hold Brooke up, so I can look at her face when it's upright. I've only seen her face sideways, so it's hard to know exactly who she looks like, and what features she has in common with Brooke. I'm definitely starting to see some differences though. I just want to put them side by side so bad.

That's all for now. Please pray for the Beal Family! They really need us right now.

Much love,
Stephanie

Read more...

Time to take a break....

I have been pretty distracted today by my daughter's condition, but also with another CDH baby who really needs your thoughts and prayers. Baby Avery is having a tough time right now with swelling and they are desperately trying to find the cause. I just read that her kidneys and heart seem to look ok, so the doctors are a bit puzzled. This is a wonderful family that has been through so much and are understandably scared out of their mind right now. If you click on the button on the right side of our page for Avery, it will take you to their blog and I know they would appreciate your support and prayers.

This morning started off a little scary when I called to get her blood gas readings. Her CO2 was up to 74. I knew this was going to happen at some point, I was just hoping we could get to a pressure of 20 before Kamryn told us to chill out. No changes were made and her blood gas this afternoon showed her CO2 at 73. She is definitely telling us to chill out with changes to her vent and that's exactly what is happening. The good thing is her CO2 didn't shoot up to the 80's or 90's like it did the last time we hit a wall. Right now, I think she is struggling just a bit to keep her CO2 down with the new settings, but she is tolerating it. This is definitely not a setback, just her telling us she needs some time to adapt and catch up.

I am really excited about her feeding! She is off the continuous feed and has been placed on a schedule of 9cc's over an hour every three hours. The total amount she is getting throughout the day hasn't increased, it's just on a schedule now. The best thing about this is they can check her stomach just before her next feed to see if everything has emptied and sure enough she is processing everything just like she should. This was definitely positive step for Kamryn!

For the first time in 22 days, I didn't go to the hospital to spend time with her. I had a bit of a scratchy throat today and wanted to make sure it was just allergies. It was tough not going up there, but she was in terrific hands with Tamara who is one of her primary nurses.

Here are some pictures of Kamryn's first bath yesterday!




The plan tonight is to let her rest and try to adapt to the new setting and then get a gameplan tomorrow morning after her 4:00am blood gas.

Thanks for all of the continued prayers and support! We couldn't do this without all of you pushing us forward!

Shawn

Read more...