Another Angel

This horrible condition has taken another precious baby far too early. Yesterday, Ireland Rose lost her battle with CDH after a very courageous fight on ECMO. Chanda and Mike had to make the most unselfish decision a parent could ever be asked to make and let their little girl go to end the suffering. We can only imagine the pain and heartache they are going through right now. We know that words won't take their grief away, but I am sure your words will help lift their spirits so please visit their blog and let them know you are thinking about them during this incredibly difficult time.

I find myself confused and angry by all the CDH babies that have been lost out here in the CDH blog world. I know the studies say 50% - 65% survival (depending on the study and case selection), but it seems like less than 50% are surviving this horrible diagnosis. Please pray for the medical community to put more resources together in finding more effective treatments for this condition. Without additional research, the odds of survival aren't going to shift in favor of these babies.

We also ask that you pray for Candice and Rob Beal who are struggling to cope with the loss of their Baby Jackson. We also ask that you pray for Baby Max who is putting up an incredible fight right now while on ECMO. After an amazing CDH run, he had a significant setback and is fighting like crazy to win this battle. We know Claire and Jordan are emotionally exhausted right now. Hang in there guys and know we are praying for you all!

Take care,

Shawn

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1st Day of 2nd Grade

Well, Hollie is back at school. She started 2nd grade today. I don't know what I'm going to do without my little helper all day long. She has truly been such a great big sister, and I'm going to miss her helping me with the babies. She was soooo excited to go back. I think she's more excited this year, because she gets a locker for the first time. She has been going around the house, like she was on a scavenger hunt, trying to find things to decorate it with. She is super bummed that she's not in the same class as her friend Isabella. But, she is in the same class as Rylee, so all is right with the world. It's going to be a busy year again this year, with Soccer, Gymnastics and Brownies. I like to keep her busy during the year, so that she stays active. And since I'm not working now, it will be so much easier to take her to all of her after school activities.

Below are pictures from this morning...





Hollie and the babies. I have dreamed of taking this picture for years! I finally got it!





Hollie and her teacher....



Hollie and Rylee



I see trouble with this seating arrangement!!!



I can't wait to pick her up this afternoon and ask her how everything went today. I'm so excited for her and I just know that this is going to be a great year!!!

Much love to all,
Stephanie

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2 Month Check Up!

So, this morning, we all went to the babies 2 month check up! It went well. Brooke weighs 13 pounds, and Kamryn weighs 10. They are both thriving and doing well. They also had to get their 2 month shots. So hard. Kamryn is used to being stuck, so she wimpered a little bit, and then fell asleep. Brooke on the other hand, wasn't too happy about the whole thing. I felt so bad for her. We also talked to the doctor about their sleeping habits. I'm staying up with them until sometimes 2 and 3 in the morning waiting for them to fall asleep. When I put them in their cribs, they cry and fuss. Shawn has said from day one, just to let them cry it out, as long as you go down the check list. Are they dry? Are they fed? Are they hurting? So, we asked the doctor and he didn't see any reason why we can't just let them work this out on their own (cry it out). I don't know about you, but being a mom, and hearing your babies cry is THE HARDEST THING!!! It must be different for Dad's. But, when I know that I can walk in there and console them, my heart tells me I should. But, then again, I'm not getting enough sleep, and it's starting to show. I'm literally a walking zombie at this point averaging about 3 to 4 hours of sleep a night, and those aren't consecutive hours either. Something has to change and it has to change FAST!!! So, I guess I'm just going to let them cry it out and see how it goes. I dread this, but it has to be done. The doctor said that if you just put them in their crib and let them fall asleep on their own, the grow up to be stronger kiddos, and less needy all the time. I have to agree with that. It's just going to be hard.

So, last night, at midnight no less, while I was up with the twins, they were being SO CUTE. I had to run downstairs to get the camera and take their picture. How cute are they??? They were just looking at me like, now what are we gonna do mom???



Kamryn... She's gaining weight too, which is awesome. she's cooing and smiling, and it's soooo cute.



Brooke, after being up most of the afternoon and evening. This picture was taken at about midnight, and she had been up for almost 8 hours. And still not sleeping. I just don't get it.



And here they are after staying up and partying all night. Life's hard when you're 2 months old, huh?



So, that's all for now. My sister and her daughter are coming in town for the Women of Faith conference. I'm really looking forward to it. Tonight, Hollie has Meet the Teacher. I can't wait to see her room, and meet Mrs. Bass. Hollie is sooo excited about school starting this year. I think she's more excited about having her very own locker. I'm not excited about getting up early and doing homework, but since I'm staying home now, it will be a little easier. Again, once we get into a routine, I'll be fine. Me and my routines, I swear!!!

I hope everyone has a good rest of the week. I'm sure Shawn will be posting some time over the weekend. We need to do our family pictures soon. Can't wait for that!

I also just talked to Candice, Jackson's mommy. We talked for almost an hour. It was so good to talk to her and see how she is doing. Candice, I enjoyed our conversation. You are such a STRONG woman. I admire your strength and courage you have to get through each day. Much love to you and your family!!!

Love,
Stephanie

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Sleep Deprived!

First of all, I just want to thank my mom (Mimi) and Joe (Papa) for coming in last weekend/week. Papa took Hollie to THE ZONE on Saturday night, and they played video games and bounced in the bounce houses all night. Then, when he left to go back to Austin on Sunday, my mom stayed here and helped out with the twins all week. She helped me put them down in the evenings and then got up with them in the mornings to let me sleep. That was sleep that I am so thankful for. Because now, I'm missing it. Shawn and I both are!

The girls are sleeping a lot during the day, and are really hard to get down at night. We literally start at 9:00pm, and have gone all the way until 1:30am. Last night, Shawn was up until 3:00am with Brooke trying to get her down. Their eating habits are so different, b/c Kamryn is still adjusting to being home, rather than being in the NICU. I think once her tummy grows a little more and she can eat more, then she will be easier. Thankfully, we have a doctor's appt. with the pediatrician on Thursday for their 2 month check up. We started to document when they eat, how much they eat, and their sleeping habits, so that we can ask the doc what gives. Needless to say, Shawn and I are both EXHAUSTED! I must say though, I'm truly thankful for my husband. He is helping me both in the evenings and in the middle of the night. I don't think I could do this without him. He has been so wonderful through all of the frustrating times, and is my rock when I need him most. I love you Bubba!

The other thing that is weighing on my mind is this stay at home mom thing. I'm not going back to work at Dr Pepper, so I'm going to be a full time stay at home mom. And we all know what that means... I have to cook. I know, the horror! I have one cook book, and that's because it's pretty and I have it on display in my kitchen, to give the facade of me knowing how to cook. I understand the basics, and can make a mean Lasagna. But, I want to be one of those moms that can do it all. Supermom! I have a lot of work to do. My mom keeps telling me not to try to be a super hero. I don't think that's what I'm going for. I'm just trying to do what I have always wanted to do, and that's to stay at home and take care of my family. It's hard work, and I'm up for the challenge. I just have a lot of learning (cooking) to do. Yesterday, at the grocery store, I think I bought every single cooking magazine on the rack. I flipped through one quickly to find a recipe that I thought Shawn and I would both like. He's a picky eater, so it's hard to find something that he would like. But, I found a beef stew that I think he would like, and I'm going to attempt to make it tomorrow. I figure that if he's not here to laugh at me as I'm chopping up vegetables, or spilling stuff all over the stove, it will be a little easier. I'll let you know how it goes. Wish me luck. If anyone out there has any good recipes, send them my way. Oh, by the way... Allison Anderson - I keep forgetting to ask you for the poppy seed chicken recipe. Can you give it to me?

That's all for now. My friend Jackie is coming in on Tuesday to visit. She's always a huge help for me, so I'm REALLY looking forward to it.

Love to all,
Stephanie

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Adjusting :)

First, I have been working on a slideshow and I think I have the first draft completed. I'm one of those who is never satisfied with the final product so I am sure this will go through many revisions over the next couple of months, but I thought I would go ahead and post it.



Adjusting to life with twins at home has been an adventure, but we are starting to get into a routine. I know it is a little odd to say, but it took us a while to get out of the NICU routine and we miss parts of it. We miss the staff that we saw and talked with each day and oddly enough became used to the routine. We don't miss the alarms, tubes, wires, and anxiety that came with the routine, but the staff became like family to us and we miss them.

Transitioning from the NICU to home has taken a little while longer than I had anticipated. Kamryn has struggled with getting her nights and days sorted out. Actually, it doesn't seem to bother her, but it makes life interesting for us operating on very little sleep. Last night was actually the first night that she seemed to have worked it out and only woke up once. Brooke has it nailed and is getting much easier to keep happy.

We are still amazed at Kamryn's progress. She is eating great and hasn't spit up a single time. Brooke actually seems to have an occasional problem with spitting up, but not Kamryn. We reflect daily on just how lucky we are to not have any issues from CDH other than a scar on her belly (which is healing very nicely and is starting to blend in with her normal skin color). We are a bit anxious about our follow up appointments in early September with the cardiologist and surgeon. We hope that she checks out ok.

Things are really going great and here are some pictures of life at our house lately.






Take care,
Shawn

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Hollie's back!

First things first. I haven't mentioned the fact that my sister came in town for 3 nights (had to talk her into the 3rd night). She was a HUGE help. She got up with Brooke all 3 nights, and I couldn't be more thankful for all her help. It allowed me to sleep, and stay sane. Thank you so much Jen!!! You rock!

Yeah, Hollie's home! Oh, I missed her so much. She was gone for 8 days, and that was the longest we have been apart. She had such a blast. Below are some pictures of her trip. Thank you so much to Aunt Judy and Uncle Bob for allowing her to come visit and keep her busy for so long. She had so much fun, and won't stop talking about all the fun things she did. So, here are some pictures below...

These two are at the rest stop on the drive to Houston.





These are Hollie aboard "The Hamlet", Bob and Judy's boat.



Hollie and Shadow (and I hear he was literally her shadow the entire trip) on the boat!!



Swimming at South Shore Harbour Resort swimming pool - PEACE!



Here's Hollie and one of her new friend's Bridgette inside a shark cage at the Moody Gardens Aquarium. Hollie was quick to point out that they weren't really under water...



This is Uncle Bob, Hollie, Bridgette and her grandmother Jeanne. WAKE UP UNCLE BOB!!!



Next up was a train ride in Herman Park. They rode right by the hospital that Hollie was born in, which was pretty cool. Then, they stopped to feed the ducks.



The next day, they went to the Children's Museum with another new friend Isabelle and her grandmother Kathy.



Can't forget the ride in Aunt Judy's convertible. Hollie thought she was ALL THAT!!!



Last day was Schlitterbahn! Hollie had a blast! She keeps telling me all about her favorite ride, which happens to be pink!



Hollie had a blast, but couldn't wait to come home to see her other little sister at the house. This was the third time Hollie saw Kamryn, and was the very first time she saw her without any tubes or wires connected to her.





Photos of all 3 girls are to come shortly! We're a little busy! LOL!

More later!

Love,
Stephanie

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Baby Jackson needs your prayers

Baby Jackson's condition has not improved overnight and he isn't expected to make it through the day. Jackson and his family could use your prayers and your comments on their blog. Please visit Baby Jackson's blog for more details and to lend your support for this family.

Thanks,
Shawn

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Day 2 at HOME!

Oh my, last night was one of the hardest nights I've had in a really long time. Shawn and I are EXHAUSTED, and that was just the first night. It took me until midnight to get Brooke down for the night. Once she was down, she slept until 5am. Kamryn, on the other hand, must have thought it was party time in the cradle, b/c she had other things on her agenda besides SLEEP! Shawn and I took turns rocking her and feeding her, but nothing seemed to work. Finally, at about 5:30, we got her down, but that's when Brooke woke up. Needless to say, Shawn and I both feel like we are sleep walking today. While twins are certainly twice the blessing, it truly is twice the work. Even though we are likely to mave many many sleepless nights, we feel so very fortunate to have both of our babies home with us.

Here are a few pics...

This one is at bedtime! This pretty much shows how our night went, as far as the fussiness goes.



And here they are in the morning. The party animals are worn out!



And here we all are. I finally got around to taking a shower at 5:00pm today. So, this is me just out of the shower, and holding Brooke and Kamryn. Not my prettiest, but I can't tell you how good it feels to have them both asleep on my chest! It really made everything seem like it's going to be all okay.



Hollie is having a blast at Aunt Judy and Uncle Bob's in Houston. They are trying to send me pictures of her and her new friend Bridgette. As soon as I get them, I'll post them. This is the longest time Hollie has been away from us, so it's a bit of an adjustment, but it really is working out great. She's been busy making Kamryn a Welcome Home poster. She's also been to the movies, been swimming and has taken a ride or two in Aunt Judy's convertible. Tomorrow, they are going to the Aquarium, then Thursday it's the Children's Museum, and then Friday, THE WATER PARK! She misses us greatly, but Aunt Judy and Uncle Bob are doing such a good job keeping her busy!

Have a good night!

Stephanie

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We are home!!!!

Yes, that's really Kamryn in the car seat ready to go in the front door!


This day has been so amazing, exciting, and at the same time sad. Not too long after we arrived, the local NBC station and the33 News arrived to do more stories on Kamryn and CDH. They will be on tv here locally on channel 5 at 4:30, 5:00, and 6:00 with a possibility of 10:00. The33 news will run the story again and add some going home footage tonight at 9:00. I will definitely post the video's tonight.

It was great having Dr. Zaretsky and Dr. Savani there to talk to the news crews. These two doctors have been nothing short of amazing and I have talked about what they have meant to our family on numerous occasions. It meant the world to us that they were there to see Kamryn go home. Traci, one of her incredible primary nurses, was interviewed for the news also. We hope this will help get the word out locally about this awful condition and raise more awareness of it.

We then spent a lot of time saying goodbye. For 48 days we have wanted to get out of there with our daughter, but when the time came to leave today, it was so difficult. 3 of our primary nurses were there to see Kamryn off (Gretchen, we missed you so much, but are thankful we were able to spend time with you Saturday night) plus a lot of other nurses that have been critical to Kamryn's recovery. I didn't realize how hard it was going to be to say goodbye to these amazing people. They are like family now and we are going to miss them more than they know. I hope they realize just how special and amazing we believe they all are.

So here it is, the departure from the NICU for Kamryn and the reunion with her sister Brooke:

Three of her four primary nurses - Tamara, Traci, and Monica

Check out Kamryn - I think she was telling us to wait because she needed to fix her hair.

Going home:






The reunion (notice Brooke hasn't missed any meals):



To the staff of Parkland and Children's, Thank You for making these pictures possible. You all will always be our hero's and we know it is because of you that our daughter is home. They gave this to Kamryn today and we look forward to hanging it next to her crib:


Thank you!

Shawn

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The BIG day!

Kamryn is scheduled to be discharged tomorrow!!!!!!!!!!!!!!!

I haven't posted about it yet, but Kamryn made the news here in Dallas on Friday! Channel 33 came to the NICU to do a story on her and the care she received at Parkland. I think they did a great job with it and most importantly it served to get the word out more about CDH. If you haven't checked it out, you can click on the video link at the top right of the blog. I would view it in full screen (just hover over it and it will give you the option to click on full screen). There has been talk about the local CBS station coming out tomorrow to do a story, but it hasn't been confirmed yet.

Today, Stef has spent time getting everything ready for Kamryn's arrival. I got the second car seat out and installed it in the car. We got more bottles and I think we are all set at this point. Hollie is away at Uncle Bob and Aunt Judy's house in Houston which actually worked out very well. It will give us time to get a routine down next week before Hollie comes back home.

I can't believe how nervous we are. Honestly, there were a number of days that I truly wondered if this day would actually happen. We prayed it would, but there were a lot of signs that pointed to the possibility of her lungs not being able to catch up. Now that the day is here, we are so excited, but so nervous. Not sure if other CDH families experienced the same thing, but it's a little scary. What if she starts breathing heavy? What if she starts spitting up? What if she stops bowel movements? Does this mean she has reherniated or there is something wrong with her lungs? Do we rush her to the ER or just take her to the pediatrician? I feel myself getting over protective of her already and I have to let that go. You tend to go through so many scenarios and it gets a little scary. I wish we could bring our primary nurses home with us!!!! They would know what to do :)

We will figure it out and I know it will all be fine. We are just nervous and I expect that is typical. We aren't sure what time discharge will be. We will head up to the NICU in the morning and just see what they say. I guess it is possible that we get there and they change their minds about Kamryn going home tomorrow, but I think that's a pretty slim chance. I fed her a bottle today and she doesn't have any problem eating and there are no signs of withdrawal from the meds! Get this, I held her today for the first time with absolutely nothing connected to her. No monitors making noise, no wires, no tubes, absolutely nothing!

We will post pics tomorrow night of her homecoming and reunion with her twin Brooke. We can't wait to get them together.

Have a great evening everyone and wish us luck tomorrow!

Shawn

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Parkland NICU Nurses Rock! - Part 2

We spent last night up at the hospital and Gretchen was working. Gretchen is a part of the resuscitation team so she doesn't always get assigned to Kamryn. The time she has spent with Karmyn has been critical to her recovery. Gretchen was the first one to go out and buy Kamryn her first accessories, such as her socks and hats. She is also known to break Kamryn out of jail and take her on field trips around the unit so she can get a change of scenery. It all goes back to their desire to care for our little girl like she was their own. Stephanie has a special place in her heart for Gretchen because she was the first person to get Stef involved with caring for Kamryn with suctioning, taking her temperature, and changing diapers. Gretchen showered Kamryn with gifts last night and I have to say it was a little emotional knowing that we are going to be leaving these incredible people like Gretchen who absolutely influenced Kamryn's recovery. I think Stef and I both almost lost it when she gave us a small sign to hang above Kamryn's crib that says: Perseverance: The Greater the Obstacle, the More Glory in Overcoming It. We feel so fortunate to have had Gretchen in our life and most importantly in Kamryn's. Gretchen, your knowledge and expertise gave us more comfort than you will ever know and your love for our little girl has brought us indescribable happiness. Thank you for the exceptional nurse and person you are! Here is Gretchen and Kamryn hanging out:


The last person to join our team, but certainly not the least, was Tamara. Tamara was assigned to Kamryn during the days. More than anything, Tamara became Stef's source of comfort and I doubt she even realized it. When things would get bad or uncertain, Stef learned to read Tamara and could quickly determine if there was a true reason for concern. So many times we perceived things going in a bad direction, but immediately found comfort in just being around Tamara. She helped us understand what was important and was not so critical which helped us put focus and energy where it should be. She can be credited with keeping us from jumping out the window on numerous occasions. Stephanie said the other day, "Everytime I see Tamara, I just know things are ok and Kamryn is in good hands." You just can't buy that kind of reassurance. We are going to miss her comforting voice on the phone when we would call for updates. Like I said before, these nurses allowed us to sleep and spend time at home with our other children and Tamara played such a key role. Tamara, we really can't thank you enough for your ability to keep us calm and focused on what's important. It has been amazing getting to know you and I know Kamryn's speedy recovery can be attributed to your time with her! Here is our another on of our heroes with Kamryn:


We are still set for discharge tomorrow (Monday) sometime and look forward to posting pics of Kamryn's homecoming!

Please continue to pray for Baby Jackson. Candice has been discharged from the hospital. Jackson is still resting on ECMO and I am believe they will be posting soon about his journey.

Take care,
Shawn

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