Wednesday, November 23, 2011

thankful hearts

Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you. 1 Thessalonians 5:16-18

our precious little baby B, who finally decided to turn so we could see her face

Last Sunday, we were invited to our dear friends Andrew and Ashley's church to share about what we're going through with the girls. Andrew was preaching on the verses above, and gave an incredibly challenging message about being thankful in all circumstances, because of who God is, not because of what He's doing for us. During part of his message, he mentioned that although we might have really great plans and intentions for what should happen in our lives or in other people's lives, they are ultimately not OUR intentions, but God's. That totally made me think of our own situation and how time and time again we are being reminded of how great of a God we serve, despite our circumstances. We don't worship and follow Him only in the good times when everything is going perfectly, but we need to do this ESPECIALLY in the hard times, because of who He is, and that should be enough for us.

Andrew had asked us to briefly share our story, which Jordan did, because I knew I probably wouldn't make it through without crying. I had to choke back the tears anyway, not simply because it was hard to relive everything we've gone through the past few months, but because of the incredible, supportive husband that the Lord has given me. He loves me and our girls so much, but ultimately he loves the Lord, and that is the most amazing blessing a woman can have in her husband. Because of his love for the Lord, I know that he wants what the Lord wants for us, and he will put that above everything else. I don't know what I would do without his support and leadership for our family. I can't wait to be a parent with him, and to see him teach our girls how to live lives that glorify the Lord.

After he shared, Andrew and Ashley asked us each a few different questions. It was such a blessing for us to be able to share in the midst of our trial, and I feel like it holds us accountable in a way. To never stop praying, trusting, and believing that the Lord is good no matter what our outcome is. So many people came up to us afterwards and shared their own stories and words of encouragement, and told us that they would be praying for our family.

26 1/2 weeks

We've had 2 different doctors appointments since I last wrote, and so far nothing much has changed, which is as much of a blessing as it is nerve wracking. Today during our ultrasound, they did the doppler readings (basically it's how they see the blood flow going from the babies to the placenta) and the one for baby A (the bigger one) looked fine. They measure "fine" based on a constant, consistent flow of blood going from the placenta to the baby. In our case, the problem is that Baby B's doppler readings are sometimes absent, meaning she is not getting far enough from the placenta as she should, and this was the case today. I had a pit in my stomach as I watched the screen, knowing just what we were looking at. The doctor said that although this isn't great, it isn't the worst case scenario quite yet. Worst case scenario is when there is reverse blood flow, meaning B is pumping her blood back to the placenta, and that is REALLY bad....when they would consider delivering right away. He said that our next goal is for me to make it to 28 weeks, and then to 32. We are praying wholeheartedly that they make it until 32 weeks, as it will be a better chance of survival for them both. But as we've kept saying, the Lord knows best and he knows just when they will come, so we are trusting in that.

I really can't say enough how grateful we are for everyones support and love. We have gotten several cards in the mail this week, had dinners made for us, and endless phone calls and messages. Thank you all for taking the time to think and pray for our little family, we are so grateful and don't want you to stop! Your words are an encouragement to our hearts.

Happy Thanksgiving to everyone, may you remember to rejoice always, and be thankful in all circumstances, no matter what you're going through, because He is good.

Friday, November 11, 2011

One more day

Our hearts are so overwhelmed with thankfulness. We were floored at how many people have told us they read the blog and are praying, passing it onto others, fasting, and being a support to us. We had a flood of messages and comments from people we know and love, and people who haven't even ever met us, and we are so grateful. WHEN our girls are here and old enough to understand, I can't wait to share with them the many words of encouragement from all of you, and how many people prayed for them before they were even born. What a blessing. Thank you.

So my good friend Danielle is a blog master ;) and creates gorgeous templates for people and their blogs. She has been praying for our babies for quite some time, and wrote me the sweetest message yesterday saying how much of an outlet blogging is and how it has blessed her and how much it can bless others, and that she wanted me to have a pretty place to do that too. Thank you Danielle for taking the time to make me a beautiful blog that I can share my heart with others on. The girls love it.

We had our weekly ultrasound scheduled for yesterday(Friday). It felt like it took an eternity for the ultrasound tech to get a scan of both babies heartbeats. Usually that's one of the first things they do, but for some reason she did what felt like a million other things before we got to hear that beautiful sound. Both hearbeats were good, and again they were moving around like crazy. Thank you God, for another day with them.

Since day 1, Baby B (the smaller of the two) has been the one who is most difficult to get photos of, and she gives the hardest time to the techs and the doctors when they are looking for what they need. Every time we leave with pictures, we usually have a completely clear photo of Baby A's profile or face, and Baby B just is way too busy having fun to cooperate. No time for pictures, Mom, I'm practicing my dancing for when I come out. The techs usually chuckle a little and say "wow, she really is busy" or something along those lines. You keep being busy, Baby B, we don't want it any other way.

Unfortunately, the doctor we usually see is out until next week, so the one we saw yesterday didn't really have a clue as to what was going on concerning our visit to CHOP on Tuesday, or much of anything else for that matter. It was a little frustrating, Jordan and I both wished our normal doctor had been there to go over everything and help us come up with a plan, as much as possible. He did however look at both babies hearts, movement, and brain activity and said all looked pretty good right now, and that every week we would assess if they needed to be delivered that week or not. Praying they make it until 32 weeks, and if so, he said that there isn't much of a difference between twins born at 32 weeks or 34, so that was reassuring. We want them to be in the healthiest environment possible, and that is the trickiest part in this whole thing, for the doctors to know exactly when that time is.

I asked how big the babies should be at this point, and he said about a pound and a half each. A is exactly that and B isn't too far behind, so we are thankful. I was thinking today about how small they will be when they are born, and how I've never seen a baby less than 7 or 8 lbs in person. It's going to be so surreal and in a way, scary. I keep envisioning them in the NICU and their little hands and feet. I want so badly to know what they look like, what they sound like. If we deliver at 32 weeks, that's only 7 weeks away. In a way, 7 weeks doesn't seem long at all, but on the other hand, I know it's going to be a continual process of looking to the Lord for strength for each day that goes by.

Again, Jordan and I appreciate all of your support SO much. We are so thankful and blessed and give all glory to the Lord for what He is doing in our lives and through our situation. We don't always know why things happen the way they do, and we may never know...but if it can bring honor to Him, we can find so much comfort in that. More soon...

Thursday, November 10, 2011

Luke 12:6-7 "Are not five sparrows sold for two pennies? Yet not ONE of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don't be afraid; you are worth more than many sparrows."

I decided to start a blog about our journey that we have been on the past 6 has been a rocky yet joyful one and I know how many of you are praying for Jordan and I and our two little miracles. We can't thank you enough for the support and love that you've shown us, and hope this gives you a better insight to what's going on. The verse above (Luke 12:6-7) has been one that has stuck with me from the beginning of our journey...if God cares for the sparrows, and doesn't forget one, how could we ever doubt his love for US, his children, when He knows every thing about us, down to every hair on our head.

I'll start from the beginning....

In May of this past year we found out I was pregnant. We were beyond excited and couldn't wait to tell our family and loved ones about what the Lord was doing in our lives...

(photo taken the day we told our parents and siblings)

In August, we went for our very first ultrasound, excited to see the first picture of our baby. I wish I could have recorded what Jordan's face looked like the minute the ultrasound tech said, "So, yeah, there's 2 in there!". To be honest, I had a feeling that we were having more than one for a few months, and had even said to a few people that I thought so, and no one believed it ofcourse:) Jordan and I had always said to each other that we would love twins, and I remember before the ultrasound, I specifically asked the Lord that they would be twins. We were ecstatic, I was crying and Jordan had to pick his jaw up off of the floor a few times. I remember waiting for the doctor after the ultrasound and Jordan said something like "Well I guess the Lord really wants us to know He is in control and we aren't". We had had a very in depth discussion the night before of our plans after the baby came, how things would go, what we would do, etc. The Lord never fails to use whatever it takes to bring us back to Him and remind us that HE is in control! As I remember this story now, it gives me peace and comfort for what we're going through, knowing that from day 1, He has made it known that He has a plan and we don't need to worry about it.

That brings me to September...I went in for a routine ultrasound right before my sisters wedding in Oregon, and the doctor told me she didn't think there was anything to worry about, but that they saw Twin A was slightly bigger than Twin B, and A had more amniotic fluid than B did. She said I shouldn't be alarmed, that this happens quite frequently with twins, but she reccomended I go see a specialist to rule out anything serious. I was able to go to the wedding (Thank the Lord), but immediately after I got back, Jordan and I went to see a specialist at Albany Med. I was about 19 weeks at that point, and they diagnosed the twins with Twin to Twin Transfusion Syndrome, Stage 1. There are 4 stages to TTTS, 1 being the "best", but in most cases it progresses and it can become increasingly dangerous for one or both of the twins. In a nutshell, TTTS happens ONLY in identical twins that share a placenta. Because they share a placenta, they can have a risk of sharing blood vessels/arteries that are in that placenta, and getting an unequal distribution of nutrients and blood, causing the bigger twin to get more, and the smaller twin to get less, and in progressed cases, the smaller twin becomes "shrink wrapped" to the side of the uterine wall, much smaller and with much less amniotic fluid than the larger twin. This can cause major problems not only in utero but after birth for both of them.

We continued to see the specialist weekly for ultrasounds, praying every day that it would not progress and that the Lord would be growing them healthy and strong. Every time we went felt like a victory when they said that it was still in Stage 1, and it hadn't progressed. We were so thankful and just felt like if we could keep making it each week like this, it would be ok. We continued this until I was 23 weeks, and at that point our doctor recommended we go to the Children's Hospital of Philadelphia to see another specialist, that specializes in TTTS and other feltal complications with multiples. We thought, it couldn't hurt right? Let's go for an evaluation, it's better to have more opinions than just one.

So Tuesday of this week was our appointment at CHOP. After a 4/12 hour drive Monday night, we crashed in the hotel for the night and woke up for our first appointment at 9:00am. We met with a genetic counselor to go over family history etc, then had an Echo Cardiogram for each of the babies to check their hearts (lots of times in TTTS cases, the bigger twin can have heart problems due to too much blood pumping to them, so they were checking for this). We then had about a 3 1/2 hour ultrasound to check every part of anatomy for each of the baby girls, which was so fun and yet so uncomfortable. Who knew laying on your back when you have 30 extra lbs caused you to feel so lightheaded and nauseaus? :) Needless to say, we were so happy to see our little ones moving around so much so that the tech had a hard time getting the shots she needed due to their ridiculous cartwheels and flips. They take after their daddy for sure.

We were encouraged to see that they had each gained weight, with A weighing 1lb 8 ounces and B weighing 1lb 4 ounces! they both had all of their fingers and toes, their heartbeats were good, and they just looked so happy. B still had much less fluid around her than A, but she hadn't entered the stage of being stuck or "shrink wrapped" yet, she still seemed to have plenty of room to move around and enjoy kicking her sister. Dr. Johnson came in to the room, muttered a few things about the placenta and other medical terms to the tech, then left. We didn't really know what to think, and at this point our only knowledge was that they were still in Stage 1 of TTTS. We went back out to the waiting room until the doctor was ready to talk with us about their findings that day.

It was about 5:30pm at this point, and we were both exhausted emotionally and physically, and anxious to hear the possible good news the doctor had for us that everything looked the same to him and the twins TTTS still hadn't progressed. This is where the hard part comes in. Dr. Johnson started out by explaining TTTS to us in depth, and told us we didn't have it. Immediately I started crying, I think as more of a relief than anything. Could they have been wrong the whole time? Could our twins really be fine and we have nothing to worry about? After he continued explaining some things, I caught on that there was something else, something more serious and something the Lord would have to give us strength to hear. Dr. Johnson introduced us to something called Selective Intrauterine Growth Restriction (SIUGR), which is a fairly complicated syndrome that can look slightly like TTTS but it's very different. It happens in 10% of all identical twins, and stems from the fact that they share a placenta. Essentially, Baby A has about 75% of the placenta, and Baby B has the rest, due to where their umbilical cords connected to the placenta. Since B doesn't have much of the placenta, she is pretty much operating on "survival mode", using what she has in her body to sustain her heart and brain and extremeties. Randomly, a rush of blood will come through the placenta from Baby A (who has a normal amount of everything, and is not operating on survival mode), and send Baby B into a sort of adrenaline rush. The doctor told us that during these random transfers, it can cause brain injury to one or both. He also said that at any point, baby B, because she is operating on survival mode, could pass away in utero, and we would have no way of preventing it or knowing until our next ultrasound. There are 3 stages to SIUGR, and we are in Stage 3, which is the newest, most complicated, and hardest to predict the outcome for.

We begged the doctor to tell us something that we could do, there had to be something. The only option he gave us was to "selectively terminate" baby B in hopes that it would provide a better outcome for baby A. He said it was illegal in most states to do it after 24 weeks (which is what I am), but that he knew a doctor in Maryland that would do it. I was hysterical at this point, and Jordan spoke for both of us saying that was not on option for us. I think one of a mother's worst fears is having to choose between one of her children, and simply to hear it made me completely sick. I PRAYED for these two little miracles, the Lord said yes. Who am I to end one of their lives simply because a doctor tells me that it could POSSIBLY give the other one a better chance? That's God's place, not mine. HE is in control, and He has our days numbered, before we are even a thought.

The rest of the appointment was pretty much a blur, but we asked if there was anything else we could do...bedrest, surgery, anything. Nothing. We just have to wait. Continue to go to weekly ultrasounds and pray with our whole hearts that our baby girls hearts are still beating and they are still thriving. Dr. Johnson suggested that we deliver early, around 32 weeks. I will be given steroids for the girls to help them develop, and they will inevitably be in the NICU for a while, but this was his best suggestion that they would be strong enough to deliver, without giving the SIUGR more chance to progress. In about 30-50% of cases, brain injury can happen to one or both of the girls, specifically if one passes in utero. This wouldn't be evident until they were born and about 6 months, when we can visibly start to see how they are developing and responding to things.

The hardest news I have ever had to hear? Hands down. I feel sick, terrified, and anxious. But there is one common thing I am noticing in this every event, at every piece of news we recieve, the Lord is saying "Wait on Me, trust in Me." Would I like a clear, difinitive diagnosis now? Ofcourse. But the Lord is requiring that we have more faith than we ever have, and for that I am thankful because HE is faithful. No matter what the outcome, He is still good, and we will still praise Him. But Oh God, please protect my little girls. Grow them healthy and strong and let us hold them and raise them to know You like we do. Let their lives be a living testimony of the miracles that only YOU are capable of, despite all other odds. Let their lives glorify you. Amen.
"Then I said, 'I will appeal to this, to the years of the right hand of the Most High. I will remember the deeds of the LORD; yes, I will remember your wonders of old. I will ponder all your work, and meditate on your mighty deeds. Your way, O God, is holy. What god is great like our God? You are the God who works wonders; you have made known your might among the peoples.'" Psalm 77 10:14