Baby Joseph

Shawn and I wanted to send our deepest condolences to the DeJohn Family. Their son Joseph was born 3 weeks ago with CDH, and lost his battle yesterday. He put up such a strong fight, but the Lord called him HOME. Here is the link to their blog http://our-cdh-journey.blogspot.com/. Sky and Carla - We are keeping you and your family in our prayers. There are no words, but please know that we are here for you. Joseph is in God's arms right this very minute, smiling down on you. Much love to you and yours.

Shawn and Stephanie

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Had a little scare, but all is good!

So, yesterday afternoon, after about the 30th trip to the bathroom of the day, I realized that my underwear appeared to have a little bit of amniotic fluid. When you're pregnant, you get all kinds of nice surprises down there... Anyway, it kind of startled me, so I called Shawn. He said to immediately call our high risk OB. I told him I'm sure it's nothing, let's just see how it goes for another day or so. Well, he insisted that I call. So, I did. Thankfully, I work right next door to their office, and was able to get in before they closed. They started with a sono, and right away the fluid looked normal. Dr. Zaretsky showed me the membrane that separates the two babies, and it was flowing like a rope in water. He said that's a good sign. He measured the fluid and all looks fine. He then checked my cervix and although it looks closed and long, he did notice that Kamryn's placenta is touching my cervix. Nothing to be alarmed about, but that could or could not be part of the cause of the "leaking". He assured me that this is not a big deal and not to fret about it. So, I'm not.

He did take the time to look at Kamryn's chest for just a little bit, and we were finally able to see her diaphragm. There is a long, constant line all across her chest. We weren't able to see the hole, but I was so happy to see that barrier. Her stomach and intestines are still up. He said that her stomach is so filled with fluid, that it could be the reason why her liver isn't able to get up there. Praise God! He also told me that it's okay that her stomach has a lot of fluid in there. That just means that she knows how to, and is practicing her swallowing. We need that!!! He looked for her liver and said that he doesn't think he sees it. Again, it's hard to tell these things on a sono, but he really looked hard. His words... "I'm hopeful". And the icing on the cake was when Kamryn let out the biggest yawn ever. It was the most adorable thing. He played that over and over for me to see. Oh, it was just so cute!!! And all during that time, Brooke kept kicking and moving all around. Almost like she was saying, what about me??? We measured both of their heartrates. Brooke's was 140 and Kamryn's was 134. Both, good and strong!

When I got home, I told Shawn I felt like a dork leaving there, b/c it was kind of a false alarm, and I really don't want to be one of those people that calls the doctor for every single twinge. Shawn said that given our situation, we have every right to question things. I will admit, being pregnant with two, feels different than being pregnant with one. Kamryn's kicks are so low, that it worries me, but the doctor said it's normal with twins. It feels like she's going to Kung Fu her way out! I was telling my mom and sister the other day that it truly feels like I'm full term. I'm only 21 weeks, and my belly is HUGE! I asked Shawn last night, how in the world can my stomach get any bigger? Guess we'll find out!

Oh, and the last bit of news!!! For Spring Break, we are going to visit Children's in Houston to get a second opinion. We have a Fetal MRI scheduled on the 20th, along with a visit with the surgeon and we will also get to visit the NICU. This will definitely give us something to compare Dallas to, which will be really nice. Since it's Hollie's Spring Break, we're going to try to make it as fun as possible, and take her to the Children's Space Center the day before. I told her about it this morning and she asked if we were going to go up in a spaceship. Priceless!!!

That's about it!!! I've had a really good past few weeks. I think we're going to paint the girls' room this weekend, which I'm SOOOOO EXCITED ABOUT!!! Hollie's going to be really jealous about it, so we're going to have to do something special for her as well. She told me this morning that if we're going to paint the babies room, then she wants a Hannah Montana room. The jealousy has already started!

One more thing... Last night as we were going to bed, Shawn said that he was so worried about me. While I was at the doctor, he was busy picking Hollie up from Gymnastics, getting her ready and taking her to soccer practice, all while his truck was overheating. He was so stressed out and so worried. Bubba - I didn't mean to worry you. I love you so much and I'm so thankful to be in this fight WITH YOU!!! You're my teammate and we are strong! This is our battle to win!!!

I hope everyone has a good weekend. Our next appointment is with Zaretsky on March 5th!

Love,
Stephanie

I have been given this verse 3 times by different friends within the last 3 weeks. This one is so meaningful to me!!!

Phil 4: 6-7 "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus".

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Amnio Results

We got a call today about the amnio results and everything came back negative for chromosomal disorders. This confirms that Kamryn does not have Down's or Trisomy. We did not do an amnio on Brooke, but there weren't any indications that she might have a disorder and we decided not to chance it.

They are still growing the cells to check for chromosome deletions, but it is highly unlikely there will be any with these results coming back good. We will get those results in 7 days.

We had a great dinner with Jennifer and Julie last night who each have a CDH baby. We asked a lot of questions and learned so much more about what to expect as we get closer to delivery. We learned a lot more about feeding after Kamryn is born and that it will still be an adventure after she gets out of the hospital. We also think we will look at Children's in Houston a little more closely now as an option. Thanks so much for having dinner with us and answering all of our questions! You all were really sweet to take time out of your evening to help us.

Talk to everyone soon!

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Another hurdle cleared!!

What an afternoon! We had a couple of appointments today and received good news all around. I want to start off and tell everyone that Brooke's exam was boring (we love boring) as everything looks fantastic. With everything going on with Kamryn, I sometimes forget to count our blessings with a child who is completely healthy. Brooke is doing fantastic!

Ok, so our afternoon started with Dr. Zaretsky (hi-risk OB) for a sono and amnio. The sono went well and he still can't see that the liver is up. Again, hard to confirm with the sono, but it isn't jumping off the screen that it is there so that's great news. The MRI on April 3rd will give us a definitive answer. The right lung looked good and is growing well. There isn't a lot of left lung right now which is not good, but not unexpected. He did some quick calculations on the Lung to Head Ration (LHR) and came up with 1.3. From what we understand (if any CDH parents want to weigh in on this please do), this number could get better with time. LHR of 1.4 or greater typically indicates a very favorable prognosis while an LHR of less than 1.0 presents substantial challenges for survival. We will know a more firm number when we have the MRI, but we will take the preliminary 1.3 for right now. This was definitely good news.

The research is somewhat mixed about how useful indicators are for prognosis in CDH babies, but the two things we are tracking and will keep you up to date on are 1) LHR (>1.4 is great) and 2) Liver down. We are doing ok on both indicators right now.

Here's what we know: Stomach and intestines are in the chest cavity on the left side for certain. Heart is pushed to the right (expected), but not compressed (good). No indication of liver up (very good - one of the biggest predictors of survival). LHR of 1.3 (good preliminary number).

Next, Stef had the amnio. I have given her so many shots over the years for infertility that I was happy it wasn't me doing it one more time. I was surprised that the needle was as big as it was (22 gauge - same size we used to inject progesterone into her hip). She was such a trooper as usual. It was uncomfortable, but you wouldn't have known by her reaction. We were blown away at what happened next. Just before he was ready to insert the needle into Kamryn's sac, Brooke's foot came flying over right where the needle was going to go. I swear, she was protecting her sister. You could tell that their sisterly bond already exists. We all just kind of stepped back and thought that was really special. We got the fluid drawn and sent off to the lab. We will know the preliminary results (Down's, Trisomy, etc) this Monday. We get the final results 10 days from now. If we get good results on Monday, it is incredibly unlikely that any problems would come back on that 10 day test.

Next up was the Cardiologist. Dr. Day was incredible and is a Texas Tech fan. That's all we needed to know to be comfortable with him. Seriously, he was incredible and just a really good guy. The sono on their hearts took about an hour total. If movement in the womb is any long term indicator of health, these babies are going to be just fine. Both doctors kept commenting on just how much they flip around. Both hearts look really good and there were no defects that he could see. He wants to see us back in 5 weeks just to make sure, but everything looked great. This was a huge hurdle because CDH babies have such a hard time with their lungs that it would be compounded greatly with a heart defect and survival deteriorates substantially if problems in both are present. We posted the new ultrasound pictures in the slideshow at the top right and they were able to take a couple 4D shots.

We were blessed with a terrific day today and we were able to gain even more hope that Kamryn will beat this condition. Thank you so much for your continued thoughts and prayers. The comments and emails we receive from you all keep us going and we can't thank you enough for the support. Each one of you is appreciated more than you will ever know.

Shawn

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Feeling Anxious!

There's really no news to post today. Tomorrow is my Amnio and Echo, so I'm starting to get a little anxious about those. I thought this bible verse was appropriate for how I'm feeling today and what's coming up tomorrow...

Romans 15:13
"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit".

Will post first thing tomorrow night, after we get home from the Amnio and Echo!

Love,
Stephanie

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Overwhelmed, but staying hopeful...

This morning, Hollie woke up with a fever, and a sore throat. I went on to church without them, and Shawn took her to the after hours/weekend doctor. Turns out, she has strep. She hasn't missed one day of school this whole year, but the doctor told Shawn that she HAS to stay home tomorrow. Thankfully, Shawn is staying home with her tomorrow, since I'm taking a day and a half off at the end of the week for the amnio, and to rest. Shawn is also feeling under the weather, so he has been Daddy of the Year all day today, taking care of Hollie, while I was at church and eating lunch with my cousin that I haven't seen in YEARS! Courtney, it was so wonderful to see you. After you left, Hollie said that mommy's cousin is beautiful and she makes the BEST brownies. Thank you! We'll get together soon again!!!

This afternoon, we went to Babies R Us to register. Oh, the drama. I know this isn't Shawn's favorite thing to do, and I could tell that he was really not having a good time. To make things less stressful, I told him we could register for the little things online (bottles, pacifiers, etc.). We moved on over to strollers, and were COMPLETELY overwhelmed. Do we get a double stroller, and just have Brooke in it when we go to the hospital to visit Kamryn? Do we just buy a single stroller, and then when Kamryn comes home, we get a double? We want one where the car seat can detach from the base in the car and then latch into the stroller, but do they make those for twins? If so, do we get one??? These decisions should be fun, but they all seem to be ruled by CDH and numerous scenarios. I got so stressed out, and moved on over to bedding. Well, I hated everything they had on display. Poor Shawn and Hollie found some gliders to sit in, b/c they knew I would take forever to pick something out. But, I took one glance at everything and hated it all. I left the store feeling relieved that we started the registry, but very distraught! I ended up going online and found adorable bedding at Babies R Us.

Tonight, I had the honor of talking to another CDH mom, Jennifer Miller (Audrey's Mom) on the phone. It feels so good to talk to people who have experienced this, especially with older kids at home. She gave me lots of great pointers, and I was taking notes the whole time. And what a coincidence that you live so close and delivered in Dallas. Jennifer, thank you so much for taking time out of your evening to talk with me. I look forward to meeting you in person!!! By the way, check your blog. We're getting an error when we try to open it.

What a weekend this has been! Shawn and I are really starting to realize the magnitude of what we're about to endure. I'm so incredibly thankful to each and everyone of you who has responded, and given me blog addresses of other people who we can talk to. What in the world would we do without the internet???

It's bed time and my mind/body is tired. More soon...

Love, Stephanie

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Venting - CDH with one of the twins

After having a really good week... Feeling good, hopeful, positive, etc... I woke up this morning (earlier than I wanted) and the first thing I thought about was Kamryn. Not that I don't think about them when I wake up and when I go to bed every day, but these thoughts were REALLY hard to think about. First of all, let me say that since we started this new blog, we have received love and support from not only friends and family, but from strangers who have been through this exact same thing. I can't even begin to describe how touched we are to hear everyone's stories, and how they dealt with certain situations. It truly helps us not only prepare for her birth with cdh, but also to prepare questions for the doctors that we're about to meet. I think my biggest stressor right now is thinking about both girls. I'm going to have one healthy newborn at home, and one in the NICU. How in the world am I going to manage that??? Then, that started the snowball effect of the "OMG's". I realized this morning that Brooke and Kamryn will not get to lay side by side each other until months after they are born, if they even get to lie beside each other at all. I realized they won't be able to touch each other, hear each other, look at each other, etc. When people come to visit me in the hospital, I'm supposed to have two babies in my arms, but I'll only have one. It kills me that everyone will be taking pictures of just Brooke, and not Kamryn, because bless her heart, she's going to be fighting for her life with tubes, needles and God knows what else going in and out of her. When will I get to hold her? When will she get to hear my voice??? I know that Shawn will be my hero, yet again, by going to the NICU with her and being with her as much as possible, when I can't. But, it's not supposed to be like that. It's supposed to be all of us in ONE room, oohing and aahing over the girls, and how they look alike, and how they don't. Which one of them looks more like us. Which one looks more like Hollie did when she was a newborn. I know that God's strength and love will get me through this, but right now, I feel pretty helpless.

Onto better thoughts... Last night, Shawn and Hollie went to their first Daddy/Daughter dance. Hollie got a brand new dress, and looked like a princess. She went with her best friend and her dad, so they had a ball. I think, from what Shawn told me, that Hollie and her friend danced more together, than they did with their own dad's. But, Shawn did tell me that they did the Chicken Dance together. Oh, I wish I could have seen that... Shawn will load the pictures later today. They're really cute! While they were gone, it felt good to get out for a little bit on my own. I went to Burger King and got a chicken sandwich, which I had been craving. And then, went to Mardels to get a gift, and some more music. It just felt good to take my time shopping around, and not worry about Hollie picking up things she shouldn't pick up, or ask me if she can have something, just because she saw it. I was on my own schedule, and it just felt good.

That's about it for me. Again, thank you to EVERYONE who has reached out to us and given their love and support. It just feels so good to know that we're not alone.

Love, Stephanie

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18 Week OB Appointment

We're back from our appointment which went really well. We weren't expecting any news, good or bad. First up was the sono, my favorite part. The girls were in there just having their own little party. They are so much fun to watch. I could actually feel them move, as she was doing the sono, which was AWESOME! She focused in on Kamryn first, and showed us the her heart/lungs, etc. We strained our eyes looking for that darn liver, but their machine is a little bit more grainy than Dr. Zyretsky's, so we didn't have any luck (Still praying that the liver will be below the diaphram and not in the chest cavity). The pictures and explanations are at the bottom of the post.

Next up, was Dr. Trylovich. We just love her. She's thorough and we NEVER feel rushed when we see her. I could talk to her all day. She reassured me that my rapid heart rate situation was normal, for as far along as I am. She told me what to keep an eye on. I feel good about it. She measured my belly. I'm 18 weeks 1 day, and my belly is measuring 22-24 weeks. We also talked about my tailbone hurting me pretty bad. She, of course, said it's normal. I find myself sitting in awkward positions, to relieve the pressure from the bone. I never had this problem carrying Hollie. I guess that's the difference between carrying one baby and twins. Well, that, and the fact that I'm 7 years older. OUCH!

We also discussed our options as far as hospitals are concerned. Through our research we have found that places like CHOP and UCSF are the best at handling CDH babies. We all agreed that we would prefer to deliver at one of these hospitals, but we have to be prepared for the possibility of Kamryn being in the hospital for many months. With Brooke being a newborn and Hollie in 2nd grade, it just doesn't seem to make sense to literally move for so many months. We talked to Dr. Trylovich about Children's here in Dallas and the care we would receive. While CHOP and UCSF would be the first choices, the difference in care doesn't seem to be enough to justify it. We may change our mind after our NICU tour, but for now we will deliver here in Dallas.

Pictures:

The babies are big enough to where you can really see detail now of what's going on.
The first picture shows Brooke on her back and you can clearly see her stomach below her diaphram and everything is normal:

When you look at Kamryn from this angle, you can't see that same black spot. Unfortunately, Kamryn wouldn't cooperate with us to get a good shot like this.

The next two pictures are looking down through them from above their head. The first picture is of Kamryn where you can easily see both the heart and the stomach next to each other in the same picture:

This next picture is of Brooke that shows how things should line up. Notice there are two seperate pictures here because you can't get a shot of the heart and stomach in the same picture. With the stomach below the heart and beneath the diaphram, you can only see one organ at a time which is how it should be.

Seeing this more clearly finally allowed us to see what the Doctor's have been able to see for a while now.

Next week is our amnio appt and more hi-res ultrasound pics that we will post. Thanks again for your continued prayers and support. We appreciate you all so much!

Stephanie

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Quick Update

Hi everyone!!! Didn't Shawn do a good job redoing the page??? I'm so proud of him!!! He worked so hard!!!

I've been getting a lot of emails lately asking how I'm feeling, so I might as well use the blog to let you know. Lately, I've been having rapid heart palpitations. Sometimes, it will happen just by sitting here doing nothing, and other times, it happens when I walk short distances. Shawn and I are keeping a very close eye on this, and we have already made my OB aware of this. We are seeing her tomorrow to talk more indepth about it, but I'm not too worried. Other than that, and the lovely side effects that come along with pregnancy (trouble turning over, getting out of bed, frequent urination, etc), I'm doing so good. I'm not feeling them move as often as I'd like, but I know that will change soon.

My hopes remain high for Kamryn. We pray every day for her survival and for her to get stable fast after she's born, so they can go in and do the surgery. We know she's a fighter, because each time we see her on the sono, she's the one who is moving the most. She's a little wiggle worm! We will post an update again tomorrow night after our doctor's appt.

Love,
Stephanie

James 1:17 "Every perfect gift is from God".

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