Parkland NICU Nurses Rock!

As you have probably figured out by now, Stephanie and I couldn't be more pleased with the care Kamryn has received while at Parkland and Children's. Tonight, I wanted to blog about the incredible medical staff that saved our daughter's life. I truly believe that they influenced her survival tremendously and our end result may not have been the same had we chosen to deliver elsewhere.

The nursing staff in the Parkland NICU has literally blown us away. We expected that they would do their jobs and fulfill their responsibilities, but we never thought or expected that they would care for Kamryn like she was their own. Yes, the doctor's at Parkland and Children's are among the best anywhere and have so much knowledge and experience. They setup the strategies for Kamryn to pull through, but we truly credit the nursing staff with saving our daughter.

While we encountered nothing but excellence from all of the nursing staff in the NICU, there are four ladies that exceeded every expectation we had and have truly become our heroes. Kamryn has four primary nurses that not only cared for Kamryn, but for our entire family. I would like to introduce two of them to you tonight, and then the other two tomorrow night.

Monica was one of the first nurses we encountered as we started our journey and we both remember saying "Wow" after we saw her work with Kamryn - and with us :). We credit her with allowing us to actually sleep in the very beginning. Monica was quick to pick up on our situation with Hollie being scared and confused and I swear she was on a mission to not only care for Kamryn, but also for Hollie. I have shared many of the notes and pictures that 'Kamryn' sent to Hollie which allowed Hollie to write back and really feel involved in the whole situation. We have an entire scrapbook of those notes that Kamryn will treasure as she gets older. Monica quickly picked up on what put us at ease and she was always right there to make it better. For instance, it drove us crazy to see the saliva build up on Kamryn's lips due to the ventilator and honestly, this wasn't an issue medically. For Stef and I, it was huge because we just felt like it might make her uncomfortable. Monica tackled this with a passion and put up a note to other nurses that said "I like to be suctioned a lot". We never asked for this, but she knew it was important to us and therefore it became critical to her. Every time Monica was with Kamryn, she never 'just completed the job', but took every opportunity to make Kamryn's and our quality of life as good as possible. Monica, I hope you know how much Stef and I appreciate you and your compassion with our entire family. You have been nothing short of amazing. Here is our hero Monica with Kamryn (see her sporting Kamryn's CDH bracelet):


The next amazing nurse to enter our life at just the right time was Traci. Traci and Monica complimented each other so incredibly well. With Traci working days, we were able to spend much more time with her and Traci's mission was to not only learn Kamryn, but she was determined to learn about Stef and I and all our craziness. In a very short amount of time, Traci had us figured out which allowed her to anticipate EVERYTHING that was on our mind. She became our advocate during rounds and spoke on our behalf whether we asked her to or not. She knew what we wanted and was on a mission to get it. One of the greatest milestone's during this journey was to hold Kamryn for the first time. Kamryn was still hooked up to every tube possible and holding her would mean disconnecting the vent, moving the vent, having additional nursing staff there, and the list goes on and understandably, the doctor's weren't real excited about the idea. Traci knew it was important for Kamryn and for us and sure enough, she fought for it and got it. Traci is Stef's comfort in the NICU and the one she is drawn to whenever she had a question. Traci was not only a gifted nurse, but she became our friend and fellow advocate for Kamryn and we credit her, like Monica, for getting Kamryn through the setbacks and to a point where she is ready to come home. Traci, thank you for your friendship and being our partner through this journey. You are absolutely incredible! Here is another of our heroes, Traci:


We had a lot of choices when it came to where we would deliver and have Kamryn's care. We made the choice to deliver at Parkland because of the team approach, expertise in CDH, doctor's who were passionate about winning, and a dedicated resuscitation team. We had a gut feeling that this was the place that would give Kamryn the best chance of survival. We never could have imagined the role the nursing staff would play and that in the end, we would credit the Parkland NICU nursing staff so much with saving our daughter's life. To all the NICU nurses that we were blessed to have work with Kamryn, thank you. You all are amazing!

Tomorrow I will introduce you to two other superstars, Gretchen and Tamara.

Kamryn is still doing well and we are still looking at Monday to take her home! Just a few more days!

Take care,
Shawn

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Possible discharge date :)

I hope I am not getting ahead of myself, but I think we possibly have a discharge date. Kamryn has done such an amazing job coming off the meds and should continue to do so given the low dose she is now on.

Today she had .07 per kg of methadone at 5:00pm. Tomorrow, they will give her the same dose and then on Saturday, give her one dose of .035 per kg. If she does well on those, Saturday will be her last dose. Methadone has a half life of roughly 12 hours, so it is likely they will keep her there Sunday to see how she does with nothing in her system and then Monday may be the big day. How incredible would that be to bring her home on Stef's birthday August 3rd!!

I have to admit that it is a little weird thinking about bringing her home. The NICU at parkland has become our routine each day for so long now. I know we will be so busy that we won't think about it much, but it just feels weird since it has become such a routine.

We should be able to confirm tomorrow about whether Monday is truly the day to go home and will let you all know. Two of her four primary nurses are working on Monday (Traci and Tamara) which would work out perfectly. Monica and Gretchen, if you are reading this we need to figure out a way to get you all up there also!!! :)

Please continue to pray for Baby Jackson. He is still on ECMO and I will update their blog with any new information. Jackson and his family could definitely use your prayers.

Take care,
Shawn

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Memories!

Today was one of those days that you just don't know how to describe it. I'll try my best though.

First of all, Kamryn is doing great. She's down to .07 on the Methadone and will be weaned again tomorrow.

As some of you may or may not know, Candice (Baby Jackson Beal's mommy) was careflighted to Parkland Hospital last night, the same hospital as Kamryn. Shawn and I were up there visiting Kamryn today, and decided to visit them and see how they are doing. Candice looked great and her spirits were high. She had a lot of family with her, and Rob was right there by her bedside, nervous, but excited. I can't tell you how much this sparked memories for Shawn and me. For me, laying there moments before the delivery of my babies not knowing how it would all unfold. And for Shawn, it probably felt odd to him to see a Dad there, who is about to embark on a whole new journey. Shawn and I tried so hard to prepare ourselves as much as possible for the CDH ride, and I must say, it's impossible to do. The emotions and feelings you go through are so up and down, that you just can't prepare yourself. Candice and Rob have done a good job preparing for what's to come as much as possible. I know the fear that she and Rob are facing right now. My heart just goes out to them.

I just ask that everyone please pray for God to wrap His healing hands around sweet baby Jackson. Pray that He provides knowledge to the doctors and nurses that are working on him. And please pray for Candice and Rob, for them to feel God's never ending love and comfort right now, through these uncertain times.

Love,
Stephanie

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I'm completely tube free!!!

We are just on top of the world right now after seeing Kamryn without her NG tube (feeding tube). We were told it should be soon, but weren't totally expecting it today. Stef and I met up at the NICU at noon and went back to see Kamryn. Traci, one of her incredible primary nurses, gave us the schedule of events for the day. We were going to take out her NG tube, give her a bath, and then feed her. It was wonderful and for the first time, everything seemed "normal" if that makes sense. After all these days, it is amazing to hold your child and not have to worry about moving tubes and wires around. She literally had NOTHING connected to her!!!

At this point, Kamryn is eating all on her own now and only has to deal with the drug withdrawal. That process is actually going better than we could have hoped for. So far, there are no signs of withdrawal and they are aggressively weaning her from the Methadone. At this rate, she should be done by Thursday or Friday as long as she doesn't show us any negative signs. We are so close to discharge we can barely stand it. Here is our little girl:

This is Traci getting ready to pull the tube out:


And here is Kamryn tube free!!!!


*** Yes, I am sneaking Rogaine into the NICU to work out the hair issue. I'm on top of it, I promise.

It has been a terrific day and hopefully the rehab continues to be uneventful. We will keep you updated tomorrow with any new developments.

Rob and Candice Beal are beginning their CDH journey today with the arrival of their son Jackson any minute now. If you haven't already gone over to their blog, I encourage you to do so to get updates on their progress. Please join us in praying for them and Baby Jackson as they begin this journey.

Take care,
Shawn

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When can I come home?

Stef and I are both wondering what the answer to this question is. We actually have a bet on the date. Last week, I felt like Kamryn's progress was on track to allow for her to come home on Friday July 31st. Stef thought Monday, August 3rd was more realistic and is also Stef's birthday so that would be the perfect present. We will see shortly who wins the bet.

They were able to wean the Methadone a little more over the weekend, but they didn't go down very much. If they continue with that rate, it seems like it will take more than a week which brings up another concern. There has been some talk, actually more like passing comments, that "Kamryn can go home on Methadone". I don't think I have really given it much thought until I noticed that they are weaning her more slowly than I would like. The thought of Stef and I administering her Methadone freaks me out a bit. It's bad enough that she is kicking the drug habit, but I would feel a bit weird being the one administering it to her, not to mention the incredible fear of screwing it up. I am going to try to not worry about things that I can't control for now.

The other frustration is the feeding schedule. I'm at the point to where I wish we could just take the leap and feed her with a bottle all 8 times a day. She is having absolutely no problem with her 6 feedings right now and I know she would take all 8. They want to move slow and I can appreciate that, but I think she is clearly telling us she can handle it. I guess you can tell I want the feeding tube out now!

On a brighter note, she has been upgraded to ACN status from ICN. There are good and bad points about this. First, being upgraded means she is doing fantastic and doesn't need the level of care she has received in the past. The bad part is she won't receive the level of care she has had in the past and nurse ratio will go up to 1:3 or 1:4. She is in a better room now that is quiet and much more relaxed. The next step down from here is CCN, but we hope she will simply be discharged from this room and we won't need to physically move to that unit.

And then there is Brooke...... She was such an easy baby the first few weeks and then everything turned upside down. We have struggled (Stephanie more than me - I have an amazing wife!) to get her down at night. She is extremely fussy at night and it goes on for hours. I think we are both a little nervous about the schedule and how things will go having both Kamryn and Brooke at home. We are bracing for that, but we will figure it out.

We had a wonderful weekend overall. Stef's dad was in town and he visited Kamryn and then took us out for an incredible meal. It was really good to see him and catch up. My mom treated us to dinner last last night celebrate my brother's birthday. Thanks for the awesome dinner and evening mom! You don't realize I guess how big the family has grown until you have to get a table for 9 people knowing that soon you will need to get a table for 10 when Kamryn joins us. I miss my dad the most during events like that and feel like he was taken from us far too early. He wanted grandchildren so bad and to have so many at the table would have made him the happiest man alive. We had a great time and hopefully Kamryn will be joining us for Stef's birthday dinner next week! I wish we would have taken some pictures of Hollie swimming yesterday and going down the water slide. Tammy, one of Stef's friends from bible study invited us over to swim yesterday and we had a hard time pulling Hollie away from the pool to leave. She is now our little fish and is swimming so well!

Well, that is about it for today. I will keep everyone posted on how Kamryn does and what her discharge date will be. It won't be much longer now!

Take care,
Shawn

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I don't need a PICC line!!

We reached another milestone today which was to remove Kamryn's PICC line. This is the line she has had from day 2 or 3 that was inserted into her upper arm and ran all the way to her heart. The main function of this line has been to deliver the sedative Versed and the pain medication Fentanyl. They completely discontinued the Fentanyl today (Versed was DC'd a number of days ago) which means she doesn't need that line which was just 1 more likely place for infection to happen. Kamryn slept right through the procedure as you can see below and Stef was able to hold her while it was being done.


That's the great news. The not so good news is we have a 1 month old in rehab right now trying to kick her drug dependency. The plan now is to administer Methadone which is a narcotic, but a longer acting narcotic than the Fentanyl through her feeding tube and then wean her slowly from the Methadone. I haven't seen the weaning schedule yet, but I anticipate it will take a week or so to get her off the drug.

We are just on top of the world right now that the line is out. The only line she has left is the feeding tube in her nose. They will continue to feed her through that as they increase her bottle feedings over the next few days. Right now she is alternating feeds between the bottle (2 ounces) and her feeding tube (2 ounces).

Our Sunday school class continues to be just amazing to us. Mandi brought us an incredible dinner last night. Melanie from Stef's bible study group bought us pizza tonight. These acts of kindness continue to keep our life more manageable!

Allison from our Sunday school class watched Brooke and Hollie today while Stef went up to the hospital. Allison, thank you so much for watching both of the girls today. We know you had your hands full today with all four kiddos, and we can't thank you enough for the time you spent with Hollie doing projects (even through all the drama - LOL). Check out the onesies that Hollie made with Allison today:

Yes, you read that correctly. Hollie put "Kamryn U Love Me". I don't know either. That's just Hollie.


Tammy and Melanie, from Stef's Bible Study group went with her to the hospital today. It meant so much to Stef to have them there to spend time with Kamryn!
We are continuing to celebrate the amazing progress that Kamryn is making everyday. We know there are so many people who read this blog daily and say prayers everyday for our little girl and family. Please know that we know you are out there and appreciate you sharing this journey with us! You all have become a part of our lives just as we have become a part of yours. Thank you!

Shawn

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Pictures

I thought that Kamryn's been hogging the spotlight lately, so I wanted to post pictures of Brooke and Hollie, as well as our other "children"!

This is Hollie at the beginning of Summer. She was given fake tattoos on the last day of school, and she thought it would be a great idea to put them all on at once. I call it her "sleeve pic".



This is Hollie being the awesome Big Sister that she is... She's been helping me so much in the mornings by feeding Brooke as I do my hair and makeup. I think this is going to get really old, really fast!



This is just Hollie being goofy. She saw me taking pictures of Brooke and begged me to take some of her.



The next two are Brooke. She's becoming very alert and STRONG!!!





And we can't leave out the rest of the family. Our cat Sadie and our dog Trigger.





That's really it. Quick update on Kamryn. They are moving her bottle feeds to every other feed, and they are switching her over to Methadone to replace the Fentanyl. Methadone is an oral medicine and if she doesn't show any withdrawal symptoms (sweating, yawning, multiple loose stools and/or sneezing) then they will be able to take her PICC line out of her arm. If she can get down to all bottle feeds, then we can take her home while she's still on Methadone. I'm thinking that bringing her home on my birthday (Aug. 3) is becoming more and more like a reality!!!

Have a good night everyone.

Love,
Stephanie

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Holding Steady

Yesterday was another GREAT DAY!!! Kamryn is just doing so well, and Shawn and I are so incredibly proud of her, as always. They have gone up to 3 bottle feedings a day now, and they have gone down on the Fentanyl to 1.4. Last night, while I was up there, I got to give her a bath in a little tub. This is a first for her (the last bath I gave her was more of a sponge bath). She wasn't quite sure what to think of the whole thing, so she pretty much cried her hoarse little cry the entire time. But, she was squeaky clean when we were done. After we dried her off and got her dressed, I held her in a warm blanket and she fell right to sleep in my arms. It was really sweet.

It's really neat going to visit Kamryn these days. She's in her own crib, and the only tube she has is her feeding tube. So, they make it really easy for us to go in there and just scoop her up and hold her. I'm so anxious to get her home, and start working on a day/night routine with the two of them. It will be so hard, but I'm so ready for it. I'm also looking forward to a complete "family of five" picture to be taken.

That's it for now. I'm sure we'll update more tonight, with pictures. I have some cute ones of Brooke in her Bumbo, and some other ones of Hollie as well.

Love,
Stephanie

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I can eat from a bottle!!

Kamryn had a great day today and hit another milestone - she had 52cc's from a bottle this morning and Stephanie was able to breast feed her this afternoon! She has done so well with her feeds! It doesn't appear that she has any oral aversion and definitely remembers how this whole feeding process works. Another hurdle cleared!

We also haven't had any real issues with spitting up or reflux. I am not convinced that we have really tested it as she has only had up to 2 ounces at a time, but things look promising! Traci, one of her primary nurses, took this picture today and made this card for Hollie from Kamryn:


She is still at 1.6 on the Fentanyl and I think they will go down another .2 tomorrow. She hasn't shown any signs of withdrawal at this point so we are hoping this continues.

Kamryn is also in a regular crib now! Everyday it seems like there is another accomplishment and we are so proud of her. Honestly, if it wasn't for the Fentanyl, I think she would be in the ACN unit right now which is a step down from the ICN she is currently in. She is just doing fantastic and we are counting down the days until we bring her home to be with the family!

Brooke is becoming a little more fussy lately and we are trying to figure her out. My guess is she just wants more attention since her sister Kamryn has received so much this last month. Stef and I just feel so blessed with her progress and how she keeps amazing everyone.

Take care,
Shawn

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Still doing great

Kamryn had another great day yesterday and they also removed her from her Versed medication. This has been used from day 1 to keep her somewhat sedated and they turned the pump off yesterday. That means she just has one more medication, Fentanyl, to get rid of. Fentanyl is a heavy duty pain medication that is more potent than morphine. Unfortunately, she has been on this everyday of her life so far and surely has developed some level of dependence on it. They are going to have to wean her slowly off of it and if my calculations are right, it could take another 2 to 3 weeks before they can turn it off.

Kamryn managed to pull her stomach tube out last night so she has to have it re-inserted which I am sure isn't pleasant. She is just totally awake and active now, which is great if we can keep her hands away from her face. We both were able to hold her yesterday and I was so happy to see the actual ventilator machine was completely gone from her bedside. I think she has proven that she is fine on her own!

Stef's step sister, Becki, was in town yesterday and they drove up to the hospital together to visit Kamryn. They had a great time, and she was just in awe of both Kamryn and Brooke. It was so nice to see her, and we look forward to her visiting again in August.

Well, Hollie and I went fishing yesterday and she has proven to be pretty good at it. Here's her biggest catch of the day:


We are continuing to do great and I will post tomorrow night with all the updates after we speak with the doctors about next steps.

Take care,
Shawn

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I'm breathing room air!!!!!!

What a day - over the past 31 days I have questioned a number of times if we would get to this point. I can't begin to explain the feelings around seeing your child breathing without assistance and no tubes in her mouth. I never thought I would enjoy a baby crying until you can't hear it for 31 days and then there is a voice!

It is hard to truly grasp how much Kamryn has endured in her first month of life, but I reflected on that a lot today as I just watched her look so much more comfortable without the tubes. I saw another baby come back from surgery today and it reminded me of where we were 28 days ago and all the ups and downs we have faced since then. We couldn't be more proud of my little girl who has taught our family so much in her first 31 days of life.

It was actually weird walking in to see her today because I immediately looked at the laptop on top of the ventilator out of habit. That screen has become such a part of my daily routine and to see it completely blank was weird and a bit shocking. It took me a while to stop looking at it. I have bragged about our four primary nurses almost on a daily basis because they truly are unbelievable and today is no different. One of our primary nurses, Monica, took care of Kamryn last night and spent her time getting Kamryn ready for the big day. Her shift was supposed to be over at 7:00, but she couldn't leave until she saw Kamryn off the vent and made sure she was ok, so she stayed on until 11:00 this morning. Just amazing. The four nurses have been our advocates everyday and they treat Kamryn like she was their own. I walked in this afternoon to see two more notes from Kamryn that Monica put together. This has to be one of the best!


Hollie was able to go see Kamryn today in the NICU and she loved it as you can see in the pictures below. Hollie and Stef read poems to Kamryn and each time Hollie would read, Kamryn would get a huge smile on her face. It was pretty neat to watch.

So, Kamryn did fine all day with just room air. Her x-ray looked incredible with a large amount of left lung. To me, it looks like her left lung is almost as big as her right lung. I wish I had a timeline for when she will come home, but we don't. We need to make sure she can keep up her respiration and not tire out. We also need to wean her from the remaining meds and she will likely have withdrawals if they go too fast so that will take some time. Finally, we need to get her to eat on her own. Overcoming these three challenges could take days or weeks, but my gut tells me it won't be more than 2 more weeks.

So here is the superstar without her vent!

And her sister Brooke!


Have a great weekend everyone!
Shawn

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Tube and Ventilator Free!!!!!!

They just extubated Kamryn and she is breathing completely on her own right now! No tubes!!! They have not needed to use CPAP breathing assistance at this point and she is doing fine. We know this could change and her lungs might get tired as the day progresses, but right now she is doing great. I am about to head up to the hospital to spend the day with her and will post tonight on how she did.

Thank you for all of the thoughts and prayers for our little girl! I'll fill everyone in on the details tonight along with pictures.

Shawn

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Could tomorrow be the big day?

I can't believe I am about to type these words........ Kamryn might be extubated from the vent as soon as tomorrow morning! I think we are in shock right now. Now, it is important to say that the moon and stars have to be in the right alignment along with a thousand other things tonight, but if all goes as planned they are going to give it a try.

They have not changed her vent settings from yesterday, but her CO2 is still in the low 50's and she is pretty much at 21% oxygen which is the same as room air. They have stopped her diuretic so she has to do well overnight and not retain fluid (one of those thousand things). We don't have a specific time other than "in the morning".

Tomorrow will be 31 days in the NICU and we hope we can finally see our precious girl with no tubes in her mouth. Please pray that tonight goes well and everything is successful tomorrow. I promise to post just as soon as possible after we know in the morning. I'm too excited to type anymore tonight which is probably a good thing for all of you who read this on your blackberry :)

Shawn

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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

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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

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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

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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

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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

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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

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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

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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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