We might have a trend....

First, thanks for all of your emails, phone calls, and comments on the blog after my temper tantrum last night. They helped more than you know today and I was able to get my head screwed on straight again. Thank you!

Day 22 in the NICU ended up being another good day for Kamryn! She was weaned again this morning and afternoon and responded very well to less assistance each time. We are actually back to the point we were at about a week ago when everything went nuts. I know the vent settings and blood gases are confusing so I thought I would explain them at a high level so it made a little more sense in future posts. If your not interested in my awful explanation of the vent, please feel free to scroll down to how the rest of the day went. ** I made a cheat sheet for future reference on the right side of the blog **

Kamryn is on a conventional ventilator in SIMV mode. The ventilator guarantees that Kamryn will receive a set number of breaths each minute (rate) with at least the predetermined level of pressure (pressure). It forces positive pressure into her lungs during these breaths and then lets her exhale passively. She can breathe more than the predetermined amount, but it is completely on her own. There are 3 main settings that the medical team works with to keep Kamryn's PH level balanced. Oxygen, pressure, and rate.

Oxygen percentage delivered is adjusted throughout the day and can be adjusted quickly depending on how well her blood is saturated with oxygen. Room air is 21% oxygen and she has been doing great with low levels between 21 and 35 percent.

Pressure in simple terms is the pressure the ventilator is using to actively push air into her lungs. This is one of the culprits behind the damage incurred by the ventilator. To be extubated, she needs to be somewhere in the teens, probably around 16-18.

Rate is how many times the ventilator will guarantee to assist her during one full minute. She can go higher than this number on her own, but the vent will give her this many full respiration's each minute. To be extubated, we would need this number down to 20 or so.

Each time they wean her settings, they focus on one or the other (pressure or rate), not both. When I talk about baby steps, it is because they only move down one number each time about 2 hours before the next scheduled blood gas.

Finally, to make sure she handled the change, they will primarily look at her carbon dioxide level, two hours later with a blood draw, which we want to be under 70. If it is under 70, she likely tolerated it just fine.

So, to recap:

Desired pressure: 15-17
Desired rate: 20
Desired CO2: Under 70

We are getting closer on the pressure, but you can see there is still a large gap with the rate. Going down by 1 number each time will take many baby steps and time and that is without any setbacks which are likely. Today, we are actually at the point we were at a week ago before things went crazy.

The rest of the day
We have Traci back today from vacation, Monica has been on the past couple of nights, Gretchen is on tonight, and Tamara will be there tomorrow or Friday so our team of the most amazing nurses anywhere is back in force for our little girls. These ladies truly are nothing short of amazing!

Traci let Stephanie help give Kamryn her first bath today which was great. Kamryn doesn't get agitated nearly as often as she used to and did great! We are just so proud of how hard Kamryn is fighting to get out of there. It's been fun to watch the past few days!

Marion from our Bible Study group came by with dinner for us tonight and our group setup a care calender for us. We just keep saying to each other how fortunate we are to have such amazing people in our lives.

Another good day and I really can't wait to let you all know how well tomorrow goes!

Take care,
Shawn

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Another baby step...

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

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Great two days!

Yesterday, I was the first one to go see Kamryn in the morning. It was nice to get there right after rounds and just visit with her. She was really sleepy though, and she opened her eyes right before I left.

The highlight of the yesterday's visit was being visited by our friends in our BFG Group at church. Allison and her husband drove all the way to the hospital, just to spend some time with us and Kamryn. They weren't expecting to get to see, so I hope it wasn't too big of a shock to them. But, it was so generous of them to drive all the way downtown to see her and us. It was also important to us that someone from the group come to visit, so that they can present a visual to the rest of the group, as to what they are praying for. Allison also gave us a cross to have the babies footprints painted on it. I'm sooo not the crafty type, but I'm up for the challenge. Thank you so much Allison!!!

Shawn and I were able to visit Kamryn together again today. I can't even begin to tell you all how much it means to me that we visit her together. My mom and my sister are in town this week, and are helping out with Brooke, so it just means a lot to me that we are able to spend quality time with Kamryn together. And by the time we got home, there was warm pizza waiting for us, brought in by Narci from our BFG Group. Thank you so much for dropping that off. The burp clothes and little sockies are ADORABLE! That is so sweet. I put a pair of the little sockies in my purse to take up to Kamryn tomorrow. I'll be sure to take pictures and post them on the blog tomorrow night. Thank you so much!!!

Tomorrow, I'm driving my mom and Hollie to the Aquarium in Downtown Dallas. Since it's so close to the hospital, I'm just going to drop them off, go see Kamryn and then go back and pick them up. It should work out perfectly.

Kamryn has had a couple of good days. She looks so peaceful, and is resting comfortably. Her CO2 has remained in the 60's after some weaning on her vent pressure and rate. She is also doing well with her increase in feeding. We had a great surprise today to see the bandage removed from her surgery. The scar isn't nearly as bad as I thought, although a little longer. We will try and get a picture tomorrow to post. We have made some baby steps forward after standing still for so many days. I am not sure I would call it a trend yet, but more positive than the last week or so. We feel better tonight after talking with Stephanie today, one of the respiratory therapists up at the hospital. She has been so nice and explained some of the vent settings that we now finally understand. Thanks Stephanie!

Please pray that we can continue to take small steps forward over the next few days!

Stephanie & Shawn

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Quick update

We have made it 19 days and it seems like a lifetime already. It's harder because I just don't see any real progress being made with Kamryn. Kamryn is still on the conventional ventilator and her peak pressure setting has been between 22-25 for so many days now. The number of breaths that the machine helps her with each minute (rate) has been between 50 - 60. They tried again to bring the rate down yesterday and her CO2 is back up in the 70's. This becomes more frustrating as each day passes. Honestly, there just doesn't seem to be any light at the end of this tunnel because we just stay stuck. They try to lower the rate, CO2 goes up, we chase her by raising everything up again, and we are back to where we started. We do this routine every couple of days.

On a positive side, she has handled her feeds well and today we will go up to 2ml/hr. This is roughly 1.6 ounces over a 24 hour period. Not a lot, but it's a start.

She was alert yesterday for a couple hours and even tried to smile a couple of times. I hope she will do that more for me today when I am up there.

The doctor didn't come by yesterday while I was there so hopefully I get a chance to talk with him today. I'll let you all know how that meeting goes.

Shawn

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Another stable day

We like stable, but would prefer progress and still don't have much really. Kamryn rested most of the day and was a lot less agitated. That's good to see, but her vent pressure and rate are still higher than we have seen in previous days. They did lower the rate tonight to see how she would react and once again her CO2 went back up. I talked to the doctor the other day about her being incredibly sensitive to rate changes, even when they are small and wondered if we should focus more on pressure (PIP). He felt rate was a better option right now. This is the 3rd time we have seen the rate change push her numbers higher so I plan on asking again tomorrow if we can focus more on weaning pressure than the rate. I'm not a doctor, but I feel like she is telling us what she needs. We'll see how that goes tomorrow.

She still seems to be tolerating her feeds at 1 ml/hr. To put this in perspective, this equates to .8 ounces over a 24 hour period which is not much. Sunday we plan to move this to 2 ml/hr and continue to build very slowly.

She definitely has less swelling today in the face which is great to see. The only drawback is that her body also loses fluid and you can see her chest really working hard on the vent when she gets agitated.

Kamryn has another primary nurse, Tamara, who has been so wonderful to Kamryn and us. She is incredibly thoughtful and is so attentive to every need Kamryn has. We just feel so confident having her on the team. We have been so fortunate to have 4 incredible nurses sign up to care for our little girl whenever they work.

Based on what we have seen, I really am starting to believe that this road to getting off the vent is going to be long. My gut tells me we have another month at least on the vent if not longer. That kills me. I know this is her life line, but it is also a monster that beats on her fragile lungs and no one knows the extent of permanent damage that is being inflicted on them. It's a necessary evil, but it's difficult to not think about the long term consequences.

We had another visit today from our Sunday School class. Melissa and her mom brought us a great dinner and gas money :) They are truly wonderful people and so kind. We have been truly blessed by our friends and family!

That's about it for tonight. We will be up with Kamryn all day tomorrow and will let you know how she is doing tomorrow night.

Shawn

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Numbers looking better

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.

Love,
Stef

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Not trending well

We have hit another wall unfortunately with Kamryn. We have stayed pretty constant on ventilator settings for a few days now, but today her carbon dioxide has elevated. We want to see this in the 50's, ok with the 60's, and concerned with the 70's. Earlier today her CO2 was 76 and tonight her CO2 was 80. They raised the rate to 53 breaths per minute from 48. No other changes were made. They will take another blood gas at 4:00 in the morning to see where she is at. I am so concerned right now about the direction things are going that my stomach is completely knotted up. I am losing some confidence in a number of things and it may just be that I don't understand everything that is happening. I truly feel like I am about to explode right now. I will probably wear a hole in the carpet from the pacing I will be doing all night. Please pray for our little girl to get over this hump and get back into positive territory.

Shawn

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