I decided to start a blog about our journey that we have been on the past 6 months...it 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...
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 story...at 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