Another baby step...

>> Tuesday, July 7, 2009

Kamryn had another good day which makes 3 days in a row and we are cautiously celebrating. It really is good news. I wasn't sure how good it was going to be after talking with the hospital this morning. They adjusted her pressure down from 24 to 23 around 2:00am and the gas at 4:00am showed her CO2 at 70. At 70 and over, they assess whether to raise the settings or not. They decided to let it ride and made another change at 2:30pm on her rate from 50 to 49. Her gas at 4:20 showed her CO2 at 66 which is great news. For now she is tolerating less assistance. It's important to understand these are very small moves on vent settings, but they are still wins and we are so proud of her! I am not sure what the plan is before the next gas at 4:00am, but hope she can keep up with any changes they make overnight.

We still feel so frustrated with the overall progress. We think it has to do with all the predictors I researched before delivery. I was aware going in that we weren't in great shape, but I really felt like we were in pretty good shape. We had an LHR of 1.4 at 26 weeks, 2.0 at 29 weeks, and then LHR's of over 3.0 after 32 weeks (an LHR over 1.4 has been used as a predictor of a good outcome in numerous studies). I know LHR is a predictor of mortality, not necessarily a predictor of days on vent or hospital stay, but having such great LHR measurements really made us feel like we would make good progress quickly. Unfortunately, I didn't rely on what I now believe is a much more important factor to hospital stay which is the total lung volume and then comparing that to a "normal" baby's lungs. When we did that at 34 weeks, Kamryn only had 25% total volume compared to her twin sister Brooke. While the LHR was fantastic, it only measures the one "good" lung on one dimension. When measured 3 dimensionally, there really wasn't much total volume there. I think that is what is now causing her so many problems.

It's hard not to look for some type of comparison to gauge where you are at. The doctors aren't able to even give me a "gut" feeling on where she is headed with all their knowledge and experience. It's hard to prepare your mind and emotions sometimes when you don't see the people who know this better than you showing much optimism or pessimism. It's just a constant, "we don't know". My brain tells me not to, but even now I find myself looking at studies that show total lung volume to the mortality rate and hospital length of stay. In the most recent study, all babies survived with 15% or more total predicted lung volume and Kamryn had 25%. If I look at the graph for hospital stay compared to lung volume and map it out to her 25% volume, she falls at 53 days in the hospital (small study with 14 baby's - hardly enough to draw conclusions). It's been 21 and at the rate we are going, I see us here much longer than 53 total days. You just want to grab onto something, anything, that will give you a sense of where you might be heading, good or bad. It's frustrating not knowing if you should allow your hopes to get up or brace for a negative outcome. You honestly feel simply lost most of the day. We know we should only focus on today as we can't change yesterday, nor should we try and anticipate tomorrow. Our heads know what we should focus on, just try telling that to your heart and stomach. So many percentages and unknowns with this defect and I know in my mind that none of them really matter. We know in the end there is no middle ground and we will have only one of two numbers to hold on to, 0% or 100%, but you honestly try to find some direction anywhere you can along the way.

On a happier note, we are now able to see Kamryn's scar from surgery and it wasn't as bad as I thought it would be. Maybe a little longer, but it's a very thin line. Looks like it will heal very well. Here's a picture from today.

Here's Brooke who is growing like a weed and is 9 pounds already! This is what she does most of the day :)

I look forward to posting more good news tomorrow. I'm forcing myself to stay hopeful and optimistic and still believe she can beat this even though I don't feel that same sense from others. Like our daughter Hollie says, we don't quit in this family.

Have a great evening everyone,
Shawn

12 comments:

Candice and Rob Beal July 7, 2009 at 9:06 PM  

ok your going to think that i'm crazy, but i get gut feelings and they are usually right and i just feel that Kam is going to make it. I know that doesn't help yal any but i thought i would put it out there. maybe after this week her progress will become faster and 53 days will look longer then what you think she should be in there for,,,,,hey you never know with these little ones....lots and lots of love and prayers candice

The Griffin Family July 7, 2009 at 9:06 PM  

Keep fighting Shawn. It seems like it won't ever stop, and that nothing is ever going to change, but it will. Our God is a GOOD God and He never changes. Scriptures tell us to "consider it pure joy when we experience trials of many kinds." What you and your family are going through right now is DEFINITELY a trial, and a BIG one. Keep your eyes on Christ and know that He is the one that is holding that little girls (and YOUR) hand through all of this. We are praying for you guys and are looking forward to more updates.

- The Griffins

Jonathan and Sarah July 7, 2009 at 9:16 PM  

You sound just like my husband with our son...he's very analytical, logical, measuring this & that & wanting to predict the outcome... it is hard but she seems to be doing so great...baby steps are always good! That's how most of these little ones seem to do it, slow & steady :) We are continuing to pray for little Kamryn & your family as I know its such a stressful & emotional time. And don't worry, that scar will look like a cat scratch before you know it. she'll have to CONVINCE people she had surgery :)Thank you for all the updates, as I know it's hard sometimes to keep it up, but it's great to know how to specifically pray for each new day. God bless you all!

Sarah
Noah's mom (RCDH)

Allison & Jay Anderson July 7, 2009 at 10:47 PM  

Thanks for posting new pictures! I'm so glad you've had three good days in a row. Though I have no idea what "LHR", pressure settings and CO2 are all about, I'm so grateful for the baby steps. Continued prayers for you and little Kamryn. For healing for her, peace for you, and comfort for all of you.

Terry July 8, 2009 at 7:08 AM  

Shawn, Stef, Hollie and Brooke,

I know it's not much consolation, but I have never had a negative thought about Kamryn and her ability to beat this. I realize I haven't seen her in person yet, but I have heard a lot from our family. I am very confident that the power of prayer and positive thinking plays a huge role in her progress, though it may seem slow. Hang in there. My love to all.
Terry

Jennifer Tenney July 8, 2009 at 8:14 AM  

I have been following your blog and progress and I just wanted to comment because your posts remind me so much of what we went through just a few months ago. My daughter (RCDH) spent 61 days in the hospital and got discharged on February 25th, 2009 (she was also 7 weeks early and spent 3 days on ECMO). Some days felt endless. We had to wait 13 long days before her surgery and long days after that before she was extubated. And I was also always staring at the numbers, asking tons of questions, doing research every night, trying to predict what would happen next. I would freak out over even a small negative change in the blood gasses. I don't know if this helps, but from my knowledge and experience and research, it seems like Kamryn is doing fantastic and I have no doubt that she will slowly and surely continue to improve!! Also, please remember that you haven't even begun to touch the options that many babies have to use to recover (oscillating ventilator, nitrious oxide, ECMO) and those babies still make it home. I will keep praying for continued progress. Before you know it, this will all seem like a distant memory. (I just had a flashback of a nurse telling me that a few months ago and my crying and not believing her). Go Kamryn!

The Adler's July 8, 2009 at 9:39 AM  

Shawn,

I know I have mentioned this to you before, but we are very similar in how we view our CDH babies. My son Carter is now at Day 73 in the hospital and still NO end in sight as to when his CDH battle will get to the point where doctor's can even start talking about "going home". I have given up on a lot of my "analyzing" because quite frankly...these babies are on their own agenda and don't follow trends and or statistical bell curves...no matter the confidence interval :-) (I work as an analyst BTW...) He has had so many ups and downs and setbacks that it will make you sick trying to figure out what will happen next. There are 6 CDH babies here in the Hospital with him and each and everyone is on their own different time table and schedule, no matter their LHR's, FLV, etc...

So...hang in there and try to look at the big picture. I see many positive things you guys have going for you and some babies just need more time. The fact that Kamryn had her surgery so quickly is positive...we had to wait nearly a month. Extubation will come, patience is hard but that will be a big hurdle and then you can look down the road a little.

Jeremy Adler

Nicole and David Crocker July 8, 2009 at 10:41 AM  

I think the unknown is the hardest part, When we found out about my daughters tumor in her head all I wanted was someone to tell me exactly what to do and get it done and tell me it was going to be fine. Of course they tell you all should be ok but then there is that little "but".... and that is terrifing. You have a little fighter on your hands, have faith in that. The one thing that got me through it all was the "serenity" prayer, when things were though and I could not think straight, I just reapeated it over and over and over again.

Mel Kelly July 8, 2009 at 12:31 PM  

Hey guys! LOVE those pictures!

Shawn, I know you're not going to listen, but the best advice I can give you is to look at the baby and not the monitors. I know it's easy to fall into the trap of analyzing every nugget of info that comes your way, but these kids are on their own schedule and they don't pay any mind to their numbers or your calender. =D

You're driving yourself crazy, I know, I've been there. We all do it to some degree. You have to pull back though and count your blessings. Kamryn is still here, and she's strong and beautiful and fighting. Brooke is doing fabulously, too! That in itself is a HUGE win! One day you will look back on all this like it was a bad dream, and you will miss seeing Kamryn's tiny little fingers and toes, even if they are hooked up to a pulse ox right now. I know it's hard to pull back and let the doctors and your daughters do their thing, but Kamryn needs you strong and calm. I can tell through your blogs that you're stressing yourself out, you know she can feel it, too!

I'm sorry if this comes off lecture-y, but I can tell you're stressing yourself out and spinning out. She might turn around and get you guys out of there quickly, or it could be months. There's nothing to do now but love her, and love your family, and wait.

We're sending positive thoughts your way and we hope she continues her forward movement! Try and take some couple time if you can and get a good night's sleep. It really does make a big difference.

Tracy Meats July 8, 2009 at 1:47 PM  

Follow Hollie's advice!! Don't quit, for Kamryn is fighting and she just needs time for her lungs to get stronger. Our doctors would never give us a time frame or their gut feeling on where Ian was headed and all I got is, "we do not know"...it is up to Ian. I think that is there way of not getting our hopes up or getting down. Take each day and cherish every moment with Kamryn, for time goes by way too fast. Brooke is adorable!

Praying for Kamryn and more good and stable days and baby steps in improvement. Sending you lots of positive thoughts and energy. I love Oogway's comment from Kung Fu Panda, "Yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the present." Hold on to those "gifts" you receive today and the moments you spend with your beautiful daughters.

Fight Kamryn fight!! Sending you much love princess!! Tracy

Lynne Brogdon July 8, 2009 at 3:30 PM  

Chin up! Kamryn is fighting and making good progress. Remember as we say in EMS, "treat the patient, not the monitor".

Judy Hamlet July 8, 2009 at 8:04 PM  

It was so wonderful to hear Kamryn has had several good days in a row. You have to hang on to all the positives and they are what will keep you going. She is a trooper, a fighter, and a little love. I can't wait to see her again. I know she knows you and Stef are there with her and how lucky she is that you are there for her every step of the way. She is loved! Uncle Bob and I love you, think of you often, and hope you feel our prayers.
Love you,
Judy

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