34 Week Milestone!

We had a great appointment with Dr. Trylovich today and it was nice to celebrate the 34 week milestone. This was a somewhat critical cutoff for us to get to in order to give Kamryn a fighting chance once she is born. We needed to get to 34 weeks and hope to make it to 37 weeks. Both of the twins have amnio pockets of 8 to 9 cm which is getting close to 10 cm which we don't want. We aren't terribly concerned about polyhydramnios, but the possibility is creeping up on us. Stef is contracting a lot more lately which freaked us out a bit, but according to Dr. Trylovich, she expects Stef to have many contractions at this point so it is completely normal.

Based on Stef's history with Hollie going past 40 weeks and the current condition of her cervix, we aren't concerned about anything happening before 37 weeks so we are going to modify our plan. Instead of being admitted on June 3rd, we are going to try and push this out to around June 8th with a target delivery date around June 16th or 17th. If Kamryn's lungs look good with an amniocentesis that week, we will go forward with the delivery.

So that's about it for today. Now we just have to wait and get mentally prepared for this as much as possible. If you haven't been following their blog, Baby Avery is having a rough time right now as they try to take her off her ECMO machine. She sure could use your thoughts and prayers right now.

We also want to thank all of you for the support and taking time to comment on the blog. We love reading your responses and it means so much to us that you take the time to drop us a quick note!

Shawn

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Conclusive MRI Results

First, we were completely surprised today to get a wonderful gift from Ashley (Maxton's Mom). Ashley, you are so creative and to think about us with this gift was incredible. Thank you so much for this special gift and for also thinking about Hollie! Here is a picture:

It's been a long day, but overall we feel a good day. We didn't learn anything surprising and we are just fine with that. We hit the road about 9:00 and had barely made it out of the neighborhood when we got the call about the MRI machine not working. We don't have a lot of luck with these machines since the one in Houston went down when we were scheduled also. We got called back about 11:30 and the actual test took about an hour. Stef was so uncomfortable throughout the entire experience, but she stayed strong and made it through the procedure.

Dr. Twickler met with us a shortly after to discuss what she found. I have to say she is the nicest lady and just incredibly thorough. She really is an authority on fetal imaging and I feel lucky that we are close enough to have been able to get her opinion. She was just terrific to work with. She was able to get fantastic, noise free images that I believe were much easier to read than what we had in Houston. The first item up for discussion was the liver position. Our gut was right, it is "up" (in the chest - not where it is supposed to be). The good thing is there is only 2.8% of the liver up and she really had to search for it. It's barely remarkable and much lower than 20% which is one of the predictors for ECMO and mortality (less than 20% is good). Finally have that mystery solved!

Another measurement of conflicting importance is Total Fetal Lung Volume and then the Observed to Expected Total Fetal Lung Volume %. Our situation with twins presents a somewhat unique situation because we are able to see what Kamryn's lungs measure and then compare them directly with where they should be by measuring Brooke's. The total volume of both Kamryn's lungs is 20cc's while Brooke's total lung volume is 81cc's. Brooke is a week ahead of Kamryn, so if you back that up a week, Kamryn should have 80cc's if all where normal. Basically, Kamryn has 25% of the lung volume that Brooke has. That's not so good since some of the studies have suggested lower survival rates with that low of a %.

At the same time, Dr. Twickler measured Kamryn's LHR (lung to head ratio) and the result was 3.3 which is extremely close to what Dr. Zaretsky has found between 3.0 - 3.4. Anything higher than 1.4 is considered good. We are in fantastic shape with LHR.

*** I go into detail about how these are calculated in my document in the upper left hand corner of the blog so I will spare everyone the details.

Total Fetal Lung Volume measures the volume or space of the lungs while LHR measures the area in just a single plane. They are measuring the lungs in two totally different ways and we are basically getting conflicting results. Dr. Twickler didn't put nearly as much weight on the measurements as she did on the liver position and we are in good shape there.

The bottom line is none of this tells us how much hypertension will be present in her lungs and ultimately how this will all play out. Stef asked afterwards what my gut was telling me and I do believe Kamryn situation is going to be a challenge to get through with many ups and downs, but I believe we have a "good" scenario and she is going to survive. Kamryn has one heck of a fight ahead of her, but she can win this. Here is one of the images of Kamryn.

Overall, today was a good day and I know Stef and I are both ready. As ready as we will ever be I suppose. Thanks for all the continued support - we honestly can't thank you all enough!

Shawn

p.s. - Scott, I do NOT watch American Idol like your comment suggests :)

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Gameplan

American Idol is on right now so it was a great opportunity to sneak away and update everyone on our appointment today. We saw Dr. Zaretsky and everything went really well and the twins are still growing like crazy. Kamryn is about 4.5 pounds and Brooke is about 5.25 pounds. Kamryn is actually measuring 5 days ahead of where a singleton baby would be at 33 weeks which is really good news. No wonder Stef is so uncomfortable. We also passed a milestone with Kamryn and that is the 4 pound weight requirement to be placed on ECMO (heart/lung bypass machine). We hope that this machine is not in our future, but if it is, she is now big enough to be placed on it if they are delivered early.

The lung to head ratio (LHR - a loose predictor of how much hypertension might be present at birth) for Kamryn is still incredibly high at 3.0. We want this to be higher than 1.4 so that is great news for our little girl.

After discussing options, we agreed that it made the most sense to be admitted into Parkland hospital on June 3rd which is 35 weeks. With Dr. Zaretsky out of town the following week, we felt it was safer to be there and have everything ready in case Stef goes into labor. Our hope is that she doesn't and when Dr. Zaretsky gets back on week 37 we will likely go ahead and deliver. So, the week of June 15th appears to be the week we will strap ourselves in for the roller coaster ride. We are as ready as we will ever be and continue to have absolute confidence in our medical team.

MRI is tomorrow at 10:00am and we are looking forward to seeing Dr. Twickler and getting more specific info on Kamryn lungs and liver position. We will update tomorrow night as that will give us a very clear picture of what we are dealing with.

Please keep Baby Avery, Baby Jaime and Baby Carter in your thoughts and prayers over the next few days. Baby Avery just had her surgery today and it looks like she will have some challenges ahead of her. Baby Jaime is doing well, but has an infection right now that they need to get under control. Baby Carter is doing well. They are trying to get him stable enough for his repair surgery. Jaime and Carter are also NICU roomies. Check in on them using the links on the right side of the blog "Keeping up with the Keirsey's", "Jaime's World" and "Carter Adler Carepage".

Looking forward to updating everyone with more good news tomorrow. Have a great evening!

Shawn

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33 Weeks Tomorrow

I can't believe that I'll be 33 weeks tomorrow. When we took the home pregnancy test four days before Halloween last year, Shawn and I were shocked to see those two lines. It's what we've been wanting to see for years and years. Then, when we had that blood test confirmed by our fertility doctor, and the numbers were so high, we just knew it was twins. Just knew it. And then, I remember thinking, man, it's going to take forever to get to June. And here we are! The time has FLOWN! I don't think it would have gone by so fast if we didn't have Kamryn to worry about. Going to the doctor week after week, has made the pregnancy go by much faster. The end is so close, yet so far away.

Last night, I had some lower abdominal and lower back cramping. It wasn't too terribly painful, but it did take my breath away. But, getting up and walking across the room takes my breath away, so it's hard to tell what it truly was. The most comfortable position to be in at that time was standing. Not good when it's 10:30 at night, and your dog tired and want to sleep. My stomach is also starting to look different too. It looks as if the babies are turning and wanting to make their debut. But, then again, what do I know? I could be totally wrong.

Hollie has been a gem lately. Over the weekend, she told me that she wanted to give me a foot massage every night until the babies arrive. I'm thinking, OKAYYYYY!!! Well, her version of a foot massage is putting lotion on my toenails with a makeup brush. But hey, it makes her feel good. Last night, Hollie and I saw our friend Katie. She's a friend that used to work with Shawn, and we have stayed friends after she moved on to teaching. Anyway, she brought Hollie some gifts to enjoy over the Summer. Thank you Katie! She also showed Hollie a picture of her new bunny, Lucy. Well, ever since then, Hollie's been talking about wanting a new bunny. It brought her to tears last night, when we told her that it probably won't be happening anytime soon (or ever for that matter). She kept coming up with ways that she could afford it, or she could earn the bunny. I have to say, she's creative when she wants something this bad. I've never seen her so obsessed with wanting a pet like this. Not going to happen though. Not right now at least. She mentioned it again this morning on the way to school. Sheesh!

I'm just getting so excited to meet these sweet baby girls. I know they both have a full head of hair. I can't wait to see their faces and put little tiny bows in their hair. I can't wait to have their tiny hands wrapped around my finger. I can't wait to see Hollie's expression when she sees her little sisters for the first time. I can't wait for so many things... But, I'm literally getting scared to death thinking about Kamryn. Her right lung looks really good, and we think her liver is down (we'll know for sure on Thursday at our MRI), but even if it is, it doesn't guarantee her survival. It breaks my heart that Hollie will only be able to visit her on Friday's from 4-6pm. Thankfully, she'll have Brooke to "help" out with, but she has such a caring heart, that I know she will be worried sick about Kamryn. We're going to have to take a ton of pictures to show her how she's doing between Fridays. I can only imagine how hard it will be for her to understand everything. Bless her sweet heart.

So, in closing, I ask for prayers regarding Hollie... To guard her heart and keep it strong after the babies are born. I ask for prayers regarding Kamryn, that she fights with all her might, and never ever gives up. Prayers for Brooke, that she remains healthy and that she'll be reunited with her twin sister as soon as possible. Prayers for Shawn... When these babies are born, I know he's going to be running ragged going from my hospital room to the NICU, trying to take in as much information, as well as update the blog. He's going to be tired, so I pray that his mind is able to stay focused on what the doctors and nurses are saying, and that he keeps his patience through it all.

We have an MFM appointment tomorrow and then our MRI on Thursday. I'm sure Shawn will be updating the blog with those two appointments.

Much, much love to all!!!

Love, Stephanie

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Thoughts and Prayers Needed - Baby Avery

A very sweet family will begin their CDH battle tomorrow when they bring Baby Avery into the world and they need your thoughts and prayers. They are in Arkansas and plan on delivering around 8:30 tomorrow morning. You can keep up with their situation by clicking on the blog link on the right called "Keeping up with the Keirseys".

Carissa and Shane, we are wishing you all the best in the days ahead and are praying for Baby Avery and for both of you.

We had our OB appointment today and everything went very well. The fluid around Kamryn seems to be down around 8cm's again which is great. Stef is getting pretty uncomfortable at this point and even small trips out of the house are becoming challenging. Dr. Trylovich measured Stef and she is showing around 40 weeks right now and we are only at 32 (on Wednesday). Both Kamryn and Brooke are transverse which is probably adding to the discomfort. Everything else checked out fine.

We see Dr. Zaretsky next week for another follow-up and then our 2nd MRI the next day. That's about it in our world. Thanks so much for the continued thoughts and prayers!

Shawn and Stef

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Surprise Baby Shower

I really do have some of the most amazing friends in my life. I'm truly thankful! Last Wednesday, I went to my Bible Study group. I'm supposed to be on bedrest, but I didn't go the week before, b/c I wasn't feeling well, and I tire so easily now when I get out. But, I missed it so much, that I wanted to go. We were also having a potluck dinner (fajitas), so maybe that had something to do with it... LOL Anyway, I was the second one there, and my friend Tammy was the first. I sat down at the table, as usual, and decided to open up the chips and hot sauce that I brought. Needless to say, I was starving. I was expecting her to sit with me and have a few before the others got there, but she kept standing, and watching the door. I thought that was odd, but my pregnancy brain didn't think beyond that. So, then the others started to pile in, and set their food up on the table. But, no one was sitting. But, I just thought they were waiting for everyone to get there, so we could eat. Anyway, after everyone was there, all the food was ready to go, and they let me go first. Smart women!!!! LOL!!! I noticed that there was a cake, but it was still in the container, and there was a piece of foil over the top so I couldn't see it. I just left it alone and didn't think anything of it. The food was awesome, and I wanted more, but didn't want to seem like a pig. So, I refrained... All of a sudden, some of them disappear, but again, my pregnancy brain just led me to believe that they had to use the restroom or wash their hands or something, so again, didn't think anything of it. When all of a sudden, they walked back in with this HUGE pink basket and sat it in front of me. It was filled with baby goodies. And I mean, filled to the TOP!!! I was so surprised. Even the card they gave me was beautiful. And then they put the cake in front of me too, which said, "Congratulations Stephanie". It was beautiful!!! I'm just so incredibly thankful to have such amazing friends, who love me and care for me so much. Every single one of these women have touched my heart in one way or another. I'm so lucky to know all of them, and I truly hope these friendships last a lifetime. Something tells me they will.

Below is a picture of the group. Thank you to Carrie, Tammy, Elizabeth, Kari Lynn, Melanie and Dorinda. Y'all are awesome!!!!

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What more could we ask for?

Than to have an appointment like we had today! It was nothing short of outstanding! We saw Dr. Zaretsky, our Maternal Fetal Medicine doctor and both twins are doing exceptionally well for 31 weeks. Brooke is over 4 pounds now which is actually further along than she should be at 31 weeks. Kamryn is right on target for a singleton pregnancy weighing 3.13 pounds. We were scared that Kamryn would start to drop off a bit due to being a twin, but she's holding her own.

We were concerned about the amniotic fluid level around Kamryn and it did come back higher than we wanted at a little over 9 cm's. Normal range is between 2-8 and she has always been closer to the 8 cm mark than the 2 cm mark, but she went over at this visit. Basically, because of the CDH situation, Kamryn isn't able to cycle the fluid as well as Brooke through swallowing and respiration. I know Kamryn is trying her hardest to do her part, but her little organs are just not in the right place. Fortunately, the elevated fluid level is somewhat to be expected and it isn't a cause for immediate concern. If it continues to increase, it could potentially be an issue that we will need to address, but right now it is fine.

Then it was time for THE measurement.......... Lung to Head Ratio (LHR - we would like this to be above 1.4 as it can indicate a better prognosis). For all of you CDH families out there, hold on tight because you won't believe this. Lung area was 8cm and head circumference was 26cm. Divide those numbers and you get an LHR of 3. I know, I almost fell out of my chair also. I think Dr. Zaretsky did also and he indicated she really does have a lot of lung tissue on the right side that you can clearly see on the sonogram. We re-measured and made sure we could clearly see all four chambers of the heart (standard and accurate LHR measurement has to be taken when you can see all four chambers of the heart on the screen). Just because the right lung is large doesn't mean there won't be severe pulmonary hypertension or tell us how many alveoli are present, but larger size does help. We were still unable to see any liver above the diaphragm which is terrific news. We were thrilled and CAUTIOUSLY optimistic. We have another MRI in two weeks and I think we will have definitive measurements at that point.

And then, Dr. Zaretsky needed to talk with us about something in June...... I could tell where he was going before he even said it. Vacation! Our MFM is going on vacation in June when we are 36 weeks. I really did almost fall out of my chair with this news. It's hard to put into words what he has meant to us through this journey and I can't imagine him not being in the room to bring these two little girls into the world. He is a doctor like no other and we sincerely believe he is a true blessing in our lives. At the same time, we are thrilled that he gets to take a much deserved vacation and this will prove to be an incentive to make it to 37 weeks when he gets back!

It's been a great day for our family and we continue to appreciate the thoughts and prayers everyone is sending our way! It's working!

Shawn

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Sneak Preview of Nursery

So, last Thursday, I had to take Hollie to gymnastics. It worked out great, b/c I took her and then just came right back home and finished up some work, relaxed a little bit longer, and then went back to pick her back up. Well, after I left to pick her up, the UPS truck came and delivered the bedding that we ordered. But, I had no idea, b/c Shawn came home during that time as well and gave me the biggest surprise. Here's what happened. As soon as I brought Hollie home, I was getting her some dinner, and heard the washing machine going. I thought, well, I thought I finished laundry for the week, but I guess there were some work out clothes that Shawn was needing and he was doing a load. So, I didn't think a thing of it. Hollie went to bed and Shawn and I were watching tv. He said he needed to go upstairs to work on the thermostat. I just figured he wanted to make sure Hollie was cool up there, and getting enough air. Didn't think a thing of it. The next morning, his alarm clock went off a little bit earlier than normal, but again, I just thought he was wanting to get an early start to his workout routine. So, I just went back to sleep. I took Hollie to school Friday morning, and when I got back home, Shawn called me and asked me to go upstairs into the babies room, b/c he thought he left something up there on the changing table that he needed for work. Now, I defintely thought something was up. As soon as I got up the stairs, I saw the bedding on both cribs. He had taken them out of the boxes/packaging, washed them all in Dreft, and made both cribs. Including tying all the little tiny bows on both bumpers. It was the best surprise I could have asked for. So, then, over the weekend, he added a shelf above the changing table for the wipes and a lamp. As well as a shelf/table to go between the cribs for storage, and an extra shelf in the closet. The room is almost done, we just need to put up the window valance, and Kamryn's "K" that is going to go above her crib. It had to be ordered, and won't be in until 2 more weeks. But, Brooke's is up and you can see it in this picture. But, we are both so happy with the room, and it's really turning out so adorable. I'm so excited about it. Shawn, thank you so much for all your hard work on this room. You've made it so much more than I wanted, and I can't thank you enough. I love you!

That's all for now. Just wanted to post about the room and show the picture. We'll post pictures of the whole room when it's complete.

Love,
Stephanie

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