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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Baby Names

We have an announcement to make! We have officially decided on their names, FINALLY. They are... drumroll please....

Brooke Ashlyn and Kamryn Hope

Kamryn is the sweet baby who has been diagnosed with CDH.

We have also decided to go forward with the amnio on Kamryn only. We just want to know one way or the other.

2TH 1:12 We pray this so that the name of our Lord Jesus may be glorified in you, and you in him, according to the grace of our God and the Lord Jesus Christ.

Stephanie

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Ultrasound Pics

Finally, some new sono pics of the babies. The first one I love, b/c they are facing each other and it looks like they are riding a see saw. The next two are 4D scans. It just shows you how close they are. They are so beautiful!

Stephanie

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Quick Update

No news today. Just wanted to put in this bible verse...

Proverbs 3: 5-6
Trust in the LORD with all your heart and lean not on your own understanding;
in all your ways acknowledge Him, and He will make your paths straight.

I have to remind myself on a daily basis that I can't fix this. I'm not in control, God is. One of the things I've been thinking about since they confirmed the diagnosis is this... God presented us with these two beautiful gifts of LIFE! And, I'm incredibly honored to be carrying such wonderful miracles!

We have an appointment with the Pediatric Cardiologist on Thursday, Feb. 12th. We also have a regular OB appt. one week before that on the 5th, with a sono, but their sono machine isn't as clear as the one at my high risk OB's. I'm loving all of these sonograms. Will post previous sono pics over the weekend.

Love,
Stephanie

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Diagnosis Confirmed

It's weird how three weeks of waiting seems like a lifetime and each day you wish the wait would be over. Once it does get here though, you wish it wasn't actually here. There was a part of us that hoped it was all just a weird angle on the ultrasound when they found it originally on Dec 29th. We both knew in our heart that wasn't going to be the case, but you still hang on to that small hope and pray for a miracle.

It is amazing to see how much they have grown in just 3 weeks. So much so that you don't need to be an ultrasound technician to identify the head, arms, legs, etc. We already knew that one of them was a girl, but the other twin has been incredibly shy in previous ultrasounds. Just a few minutes into the ultrasound we heard that we are indeed having two girls. We were thrilled to finally have that mystery solved and even more thrilled to know that both are girls. Girls are fighters and we need that!

They did their usual measurements and both twins are growing at the perfect rate. They both are actually measuring the same as if this was a single pregnancy. Heart beats were around 143 and measured 16 weeks 3 days.

Each time we heard good measurements, we braced a little more for what we knew was coming. Not long after they started looking at Twin A, it was confirmed. Our little girl has a Congenital Diaphramatic Hernia on the left side which is the most common location. The fact that we had prepared for this outcome definitely took some of the sting away and put us into fact finding mode. We had plenty of questions. Unfortunately, answers were not as plentiful as we had hoped. What we do know is the stomach and intestines are in the chest cavity. The heart is pushed slightly to the right side of where it should be. What we don't know is if the liver is in the cavity or not. This is critical to the outcome of this condition. The problem with CDH is that the organs prevent the lungs from developing. The intestines and stomach are both fairly soft and they give which still allows the lung to develop to some extent. If we find out down the road that only these two organs are in the cavity, the prognosis for survival is better than 75%. If we find out that the liver is in the cavity, then we have a different ballgame entirely. The liver is much more firm than the other organs and it doesn't give when the lungs try to grow and push against it. The prognosis for this situation is not nearly as bright. Fortunately, the doctor didn't see the liver in the chest cavity, but his words were followed by a phrase I am getting tired of hearing...... "but, it's still early".

There is a slightly higher chance that this will be accompanied by chromosomal abnormalities like Down's. The only way to confirm this is to do an amnio. Unfortunately, that raises concerns and risks to both twins. Our decision on this will come over the next few weeks after a lot of prayer and discussion.

Our next step is to wait 4 weeks to see the pediatric cardiologist to check her heart to see if there are any issues there. We will also get another ultrasound to see if they can see anything else. After that it is 6 more weeks of waiting until we go for the MRI which will really tell us the full story of what we are dealing with.

Thanks again for all of your thoughts and prayers. We will post the ultrasound pics this weekend and we will continue to keep everyone updated.

Shawn

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Ultrasound pics

This picture is of the twins at 9 weeks gestation. A friend of mine at work pointed out that it looks like they are encased in a heart. I had never seen it before, but now, every time I look at it, I see it and just think WOW!!!

Jeremiah 29:11 “For I know the plans I have for you” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future”.

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Maybe It Was a Mistake

I have my regular OB appt, and scheduled sono. We’re excited and nervous. Both Shawn and I are thinking, the baby’s stomach will be down, and everything will be just fine. We tell the sono tech that we know there’s something wrong with one of the babies, but we didn’t want to tell her exactly what it was, b/c we wanted to see if she could see it. Right away, she sees the birth defect. Oh, we were so hoping that she would be okay. Again, she shows us the difference between the other twin, who is now confirmed to be a girl. Anyway, I begin to cry. We meet with my OB after the sono, and we have so many questions. Questions, that can’t be answered right now. I just can’t stop crying. I’m so heart broken, and sad. We asked her out of all the CDH babies she’s seen diagnosed, how many survived. Her words, “not many”. I know she’s just trying to be truthful. Which I truly appreciate. I really do. I just wish the truth could have been better. So, now we wait. January 21, 2009 is our next appointment with the high risk OB to confirm the diagnosis and talk about next steps. I’m anxious, nervous and ready to get this ball rolling and discover all we need to, in order to save this sweet baby’s life. Through every single step of this short journey so far, Shawn has been nothing but a champion to me. We hug and cry to each other often. We are going to get through this battle together, just like all our other battles we’ve been faced with. He told me that if I ever need time alone, to just let him know. I don’t want to go through any of this without him by my side. He’s so strong emotionally, and without him, I am weak. He’s my strength! Matthew 19:26 “Jesus looked at them and said, “with man, this is impossible, but with God, all things are possible”.

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