Pretty good day

We more or less stayed the same today on Kamryn's ventilator settings which means we didn't take any steps back. The only negative today was with feeds. There were some issues last night and this morning when she spit up a small amount of the feeds so they decided to cut them off completely for a little while. I think they will start again tomorrow with 1ml/hr and work up from there taking it a little slower.

Kamryn is still a little swollen and I thought this would work itself out a little faster than it has. She is still peeing great, but she just hasn't been able to get all of it out of her. She is gaining weight and hit the 8 pound mark today!! Her blood gases are really good, but just not quite good enough to wean yet. I think that will happen tomorrow if the 4:00am gases look good.

Our primary nurses rock! I mean we have been blessed by a rock solid team who just adore Kamryn. Gretchen went out and got her some little socks and hats the other day to accessorize her! Kamryn looks really cute with them on. Traci and Monica have been such a comfort to us. I told Traci today that the three of them have allowed us to sleep at night because we know they are in such great hands. We are a little bummed that Traci is going on vacation and won't be back until Wed next week. We are going to miss her greatly, but she deserves a break! Here is the latest note that Monica made for Hollie as they continue to trade notes back and forth.

Kamryn has adjusted well to the new placement of her stomach tube. They moved it from her mouth to her nose and I think she prefers it there if it has to be in.

I think that is about it. I hope tomorrow I can report some positive movement on the vent settings!

Have a great evening!
Shawn

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Back in the right direction!

It's been a very positive couple of days and we couldn't be more proud of our little girl. She's back to kicking some CDH butt! The medical team has taken her back down to 22 on her peak pressure. To put this in context, she was at 20 just before surgery and was up to 30 for a couple of days after surgery. One of the targets will be to get this peak down to the mid teens before we can take her off the vent. She is definitely making progress! All of her blood gases over the past couple of days have been great and her carbon dioxide levels have been holding steady in the 50's. We like them in the 50's, can tolerate them in the 60's, and need a new plan if they are in the 70's. They have taken the arterial line out of her ankle because it was clotting a bit. This is actually good because it is one less tube and one less possible source of infection. Bad part is they have to stick her in the heal to get blood each time now.

We started her out on 1ml/hr of breast milk yesterday. This is really next to nothing, but a start. She did so well holding it down they went to 4ml/hr and she seems to be doing fine with that. I think we can conclude that her stomach is indeed working fine at this point!

We are so happy to have Monica and Tracy back with Kamryn in the NICU. Monica is her primary nurse for the evenings along with Gretchen and Tracy is he primary day nurse. Tracy moved Kamryn to her stomach today and she slept in that position for hours. It's the first time since birth she hasn't been on her back and she loved it! I just walk in there everyday and count our blessings for the nursing staff. They are just amazing to Kamryn and to us. We found out today that our Neonatologist that has been directing Kamryn's care since she was born is off service starting tomorrow. We should meet the new doctor tomorrow. Definitely a little nervous about this change, but keeping an open mind. We have been assured that he is wonderful.

Stef's sister, Jennifer, is in town for a few days and we are so excited. They actually just left to go up to the hospital to see Kamryn.

Well, that's about it for today. We are in good spirits and Kamryn is moving in the right direction! Here's some pictures from yesterday. Talk to you all tomorrow.

Shawn

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Just my thouhgts.

Hi everyone, it's Stephanie. What a rollercoaster we have been through, and the girls are only 11 days old. Shawn has done an amazing job of keeping y'all updated. He's also been amazing with helping me at home with Brooke and Hollie. He's a fabulous Daddy and I'm so proud that he's my husband.

Yesterday, I took a break from going to see Kamryn. It was the longest day of my life. I tried to stay busy with Brooke while Hollie was at the water park, and Shawn was at the hospital. I took Brooke to the grocery store with me, and she did so great. It was fun to watch people ooh and aah over her. I just wanted to scream out to everyone, HER TWIN IS IN THE NICU AND SHE WILL BE COMING HOME TO BE WITH US!!!! All I do all day long is look at Brooke and wonder if she feels the same void that we feel by not having Kamryn here at home with us.

Like Shawn said, going up to the hospital and watching her look into your eyes, as if she's pleading for your help, is so difficult. Although, I told Shawn last night, maybe she's looking at us and saying, "I'm fighting hard, just like you told me to". Seeing Shawn post yesterday, I could tell he was hurting. I went over to him and asked if he was okay and that was the first time I'd seen him break down and cry. We just held each other and cried. We both feel so helpless. And then of course, Brooke started fussing... This emotional rollercoaster seems to get harder and harder, and I truly expected it to get easier and easier for some strange reason. I guess the more she comes off of her meds, the more she looks and acts like Brooke.

It amazes me that we have Brooke on a schedule already, and she's such a great baby. She's so easy to care for, and she only wakes up 1-2 times at night. But, I have to wonder, would Kamryn be the same way? Would she sleep right along with her sister? Would she wake up when Brooke wakes up? Would she cry, when Brooke cries? I wonder what it WILL be like having two infants to take care of here at the house. I can't tell you how much I'm looking forward to that stress and hard work. I long for it. I just feel like I'm getting farther and farther away from that. Yesterday was the first time I truly wondered if she was coming home or not... But, we called late last night and she had 2 really good gases, and we are taking some of my breast milk up there today for her to munch on. I'm so anxious to see how she does with it.

That's all for me for now. Hollie's going swimming with a friend today, while Shawn and I go up to the hospital to visit Kamryn. I can't wait to see her and hold her hand again. We'll take some more pictures and post them tonight.

Love,
Stephanie

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Holding on to hope....

First, let me apologize for not posting yesterday. We have invited all of you into our lives and know so many of you are walking with us daily as best you can from a far. I fell down on my responsibility to all of you yesterday by not posting and for that I apologize. I made myself a promise to not leave you all hanging and I won't going forward.

I didn't post anything yesterday because I am honestly a bit overwhelmed right now. Our little girl has been so strong, but she has stalled out on progress. The medical team has been trying different strategies to get over this hump, but haven't had success. I asked them today, maybe begged is a more appropriate word, to just chill out on jacking with her. They wanted to try feeding today. I appreciate that the longer we wait to feed, the harder it will be for her to feed. I get that, but I also know that she is stressed right now and if she rejects the feeding, it will only add to her unstable condition. I haven't interjected on any strategy up to this point, but I couldn't hold back today. I begged to just let my baby rest today and get back on track in the right direction and I think he saw my pain and agreed.

Kamryn isn't as sedated as she has been in the past. This is good to have her moving around as it will help her get rid of some of the fluid and work the muscles she will need to breathe on her own one day. At the same time, she becomes more aware of the tubes down her throat. She wants them out so badly. She tugs at them and looks at me for help. I'm her dad and am supposed to protect her. I am supposed to take the pain and discomfort away and I want to just pull them out. I feel like I am letting her down because I won't help her. When she looks right at me, it feels like she is asking why her daddy won't lift his hand to get her out of there. I spent most of my time explaining to her why I couldn't help and we need her to keep fighting. It was the first day I've shed a tear since all of this started. I'm tired and the journey has only just begun.

Let me assure everyone that we haven't really taken steps backwards, we are just not moving forward really. We're just stuck. There is some good news to report. She has had a couple more bowel movements. Her heart ECHO yesterday was completely normal and this was the first ECHO that showed her pulmonary pressure has come down. She is off her dopamine which means she is holding her blood pressure steady all by herself. We have though been moved out of the isolation room which I am not crazy about.

So the gameplan today is to let her rest, try to get her numbers back in line, and then tomorrow see where we go from here.

We are still eating the unbelievable food that our friend Jackie made for us when she came to visit for a few days and help out with EVERYTHING! Last night our neighbors came over with a small pink bucket and inside were gift cards to different places that looked like flowers coming out of the bucket. We were just stunned with their generosity. Our good friends Scott and Amanda are in town to visit and they took Hollie to the water park today with their daughter Jaycee. We are going to hang out with them tonight at the house and we are really looking forward to that. Next week our Sunday school class will be coming by to bring us food and it will be great visiting with them each night. We really can't get over the kindness and generosity of our friends and family. They have just been amazing to us. It's overwhelming to receive this much support and we would be a disaster right now without all of it.

We continue to hold out hope that Kamryn works this out and gets over the hump very soon. I hope I have a great report for everyone tomorrow.

Thank you for the continued support and prayers for our little princess!

Shawn

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Kamryn Pooped & Pictures!

No, not pictures of the poop but random pictures that we thought you all would enjoy. Kamryn is doing very good again today and she pooped! Her bowels woke up! She is just fighting her way through the CDH challenges and continues on a positive trend. I think we are about to start testing the waters a little bit more to see how she does. I think the next couple of days will be more eventful.

Brooke had a big day today with her first Pediatrician visit. She did fantastic and the doctor said she looked great. Lungs sound totally clear!

Today, we received a pretty amazing package. A whole turkey, fruits, nuts, cookies, etc... We are extremely grateful for this, as it helps us spend more time with the girls in these first few weeks. However, we're not sure who it's from. Please let us know if this is from you. We would like to thank you appropriately.

Our fabulous NICU nurses continue to be such a blessing to both Kamryn and our entire family. We continue to trade notes between Kamryn and Hollie each day. Here are the two most recent. These ladies in the Parkland NICU are just amazing to us!



This picture is just before surgery and it is my favorite of Stef and Kamryn.

Another one of my beautiful girls, Brooke.

Our incredible surgeon, Dr. Megison, explaining how well the surgery went.

Dr. Megison putting everything in the right place inside Kamryn.

And our little girl's heroes, Dr. Trylovich and Dr. Zaretsky. I believe these are the most phenomenal OB docs in the country. I am sure I am pontificating about something here and driving them both crazy.....

And finally, Ms. Kamryn with her bow on.

Have a great night everyone,
Shawn

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Kamryn is such a fighter!

I couldn't be more proud of my little girl and her determination to beat CDH! She has again gone down on her peak pressure and is now at 25. She was at 30 just a couple of days ago and she gets a lot less agitated now when she is moved or touched. We need to get these peak pressures down to around 15 before we can look at graduating to the CPAP breathing assistance. There are other things that will need to happen, but that is one of the big targets. We can hear bowel sounds today and her lungs sound much more clear. The chest x-rays show her heart shifting a little more to the center of her chest and her right lung is inflating more. Each day this gets a little better and we couldn't be more happy!

The NICU nurses continue to be absolutely wonderful to Kamryn and to our family. Each day, Hollie writes a letter to Kamryn and attaches a picture that they put up above her bed. Then, they write a letter back to Hollie with a picture. It makes Hollie feel so good and helps tremendously since she is not allowed in the NICU at all. Here is today's letter from Kamryn. How cool is this?



I just can't say enough about the entire medical team up there at Parkland. Just amazing!

Stef and I have a big night planned. We are going up to the hospital to see our little girl and then we are going out to have a date! Jackie is watching Brooke and we are going to get to go to dinner together and try to relax for just a couple hours. We are really looking forward to it.

Well, that's about it for today. Kamryn keeps on fighting and your thoughts and prayers are getting her and us through this journey each day. We appreciate all of you so very much!

Take care,
Shawn

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Positive trend continues

We are happy to report that we are back into a positive trend. The improvements with Kamryn today were small, but we will take it. I had the first shift today and Kamryn spent the entire time awake and eyes wide open. It is amazing to watch her look around the room. I can only wonder what she is thinking. She stares at the tubes coming out of her mouth and I just get a sense that she knows this isn't right. She tugs at her stomach tube and I just want to pull it out for her. I know it's necessary, but it isn't comfortable for my little girl and it breaks my heart to see her like that. I know she is heavily sedated, but it is just so hard to watch.

I need to take this opportunity to express my thanks to the Parkland NICU nurses and doctors. They are, without a doubt, simply amazing people and medical professionals. Regardless of Kamryn's outcome, I will know in my heart that Kamryn is in the best hands possible and that our medical team has done everything that can and should be done to save her life. Each of them are sincerely interested in making sure we have every question answered and spend so much time explaining the current strategy. I can honestly say we haven't met a single nurse or doctor that we aren't 100% confident in. I spent a number of hours today with her nurse Tracy who I can tell just loves our little girl so much. She is so sweet and compassionate and I feel really confident when I leave the NICU. You can't put a price on that feeling. We have spent time with so many nurses and doctors who have been absolutely incredible, but it is nice to start seeing the same people assigned for numerous shifts. Stef took the second shift and Gretchen was there for another night shift. Gretchen let Stef change Kamryn's diaper and brush her gums. Stef walked through the door tonight on top of the world. That was the first real physical interaction we have had with our little girl since she was born.

Brooke has proved to be a very easy baby (lets hope that continues). It's been so fun taking care of her although I am having to re-learn everything. She really is exactly like Hollie was when she was a baby. We are excited to have Jackie, one of Stef's very best friends from Houston, staying with us this week. It has been terrific for Stef and she is so helpful.

Well, that's the update for tonight. Hoping for more positive steps tomorrow!

Have a great evening everyone!
Shawn

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