Expecting the Unexpected: 22 week update

Another 2 weeks has passed & we had a double whammy with appointments back to back early this week. We saw my obstetrician on Monday, heard 2 little heartbeats, saw that I had gained about 6-7 pounds over the past 4 weeks (rock on) & received the lab order for the beloved glucose tolerance test.  We had a good laugh over my 34cm fundal height which means that my belly with twins at 22 1/2 weeks is the same size as someone with one baby at 34 weeks.  It was a quick & painless visit, just the way I like them : ) 

Tuesday's appointment for my ultrasound was not quite the same.  I usually like writing these updates as soon as I can following the appointments but it has taken a bit longer to process the vast amount of information received & stabilize emotionally.  I always feel great until we are sitting waiting for my name to be called.  At that point I begin to feel a little nervous.  The sonographer was as sweet as sweet can be & I am so thankful for people like that. This scan was mainly for growth so it was much quicker than the previous full anatomy scans we have had the past 2 visits. 

Summary:

• Owen went from 10 ounces to 14 ounces
• Anson went from 13 ounces to 20 ounces (1lb 4oz)
• This change in size has moved the percentage difference from 23% to 30%.  Monochorionic twins should be under 20% difference in size so this result alone is concerning. 
• The amniotic fluid levels in each sac have changed a bit as well & are on the outskirts of the normal range. Owen's is on the low side & Anson's is on the high side with one measurement in the abnormal range.
• Normal fetal doppler results for any of you medical people out there who know what that means 
• Owen is still head down while Anson has flipped back to breech position & actually had his foot below Owen's head being the closest body part to the outside world via one exit : ) 

As soon as the sonographer told us the weights & fluid difference I just started crying. I was trying to keep it together in front of her as she entered all the information into my file. This was silly. I never mind a patient who just loses it in the midst of a disappointing situation so I am guessing she wouldn't have either.  It was just strange to be on the other side. I used up a lot of her tissues with my silent sobbing.

It seemed like we waited FOREVER for the fetal radiology physician to come in & visit with us.  So, following lots of tears and a little bit of small talk with my precious husband, an MFM physician walked through the door.  We were not scheduled to see him but due to the results, he was consulted. I do not personally know him but actually smiled big when he came in. I was almost relieved to see his face knowing he had recently cared for a friend of mine who has walked through Twin to Twin Transfusion Syndrome. He was the perfect amount of somberness/compassion.  He was patient with us as we asked questions & was very honest.  He actually re-scanned me to check the fluid himself & had results that were fairly close to the sonographer which is expected with wiggly babies changing the way the fluid looks in there.  

Summary of what he said:

• They look stable at the moment with Owen still having a normal amount of fluid even if its on the low end. 
• Both weights are on the growth chart but are just far apart at 18th percentile & 58th percentile
• It could be moving towards TTTS, it could be unequal placental sharing (more about the difference between the two later).
• There are no other signs of TTTS at the moment. 
• Return in one week (instead of the usual two)  for a follow up scan.

We asked what the possibilities are for what we may find next week.  His answer was along the lines of the following:

• It could stay the same with both babies growing with the 30% percent discordance in size maintaining adequate amount of fluid in each sac. It is possible that this could continue on through the entire pregnancy if the only thing occurring is unequal placental sharing. If it does go this way then I would be delivered around 34 weeks or at any point that they took a turn for the worse. 
• It rarely improves, not to say that it cannot but it is not likely to do so.
• It could show symptoms pointing him towards a diagnosis of TTTS such as Owen's fluid decreasing to an abnormal amount (oligohydramnios) & Anson increasing to an abnormal amount (polyhydramnios). This is indicative of Stage 1 TTTS.  Stage 2  is if the bladder is not able to be visualized on the donor twin (which is Owen). It goes on from there moving through changes in the blood flow through the umbilical cords, fluid volume overload in recipient twin (Anson) causing cardiac issues to losing a baby in the womb.     
• If it is diagnosed as TTTS depending on the presence of particular findings on the ultrasound, it may be recommended that we travel out of state for me to receive laser therapy. This could be a recommendation to fly out for treatment within a couple days or within the week. This is only offered through 26 weeks & in 5-6 fetal surgery centers in the United States. 

Wow, information overload right? It turns out that there is a fetal surgery center in Houston at Texas Children's Hospital that is only about a 30-40 minute drive from my parents house. What a blessing just to know we would be "home" in Texas, especially if it happens to fall over Christmas. I have been in contact with one of the coordinators this week & have had a referral sent over just in case we see worse results via ultrasound next week. They are able to go ahead and process out of state insurance & have everything set so if the physician makes the call, they are ready for me.  I do like to be as prepared as I can be in this "expecting the unexpected" stage of life : ) The coordinator is awesome & spent plenty of time with me on the phone yesterday explaining things. This first thing she said was "I just want to tell you that it is very reassuring that you are so far along in your pregnancy & just now seeing signs of TTTS if that ends up being the diagnosis." We are just a week and a day away from viability at 24 weeks although we pray that we fly by that & keep in as long as we can! With TTTS treatment, the laser procedure in some cases ends with the loss of the smaller baby, our little Owen.  I can't get this possibility out of my head, or the reality that should they continue on with just a discordance in size we will more than likely have babies in the NICU.  I will say that I don't think it is a coincidence that we named Baby A, Owen which means "young warrior." We pray that this little guy will be strong. 

I could have never predicted the emotional ups & downs this pregnancy would be. I figured with twins it was all "ups" since it is just so exciting! Haha, I have not found that to be true. It hurts to be in the middle of it at times but the Lord has drawn close to my heart providing much comfort & peace as we wait to see what will happen next.  As I heard the weights & fluid measurements spoken to me in the dim ultrasound room I felt like the walls were caving in on me.  The tears started coming as I felt disappointment set in. My mind took off into thinking through all the worse case scenarios (this is odd for me) & I felt so weak, so helpless, like I had been thrown off the mountain top of starting to collect little matching boy things & being thrilled along with Charlotte as she talks all about her TWO baby brothers, down into the valley again.  I remember what it feels like from a few weeks ago but it always seems awful to be there again.  Music is so meaningful to me as it really opens up my heart towards receiving from God.  In that moment a song came to mind that we sang on Sunday.  It's a Christmas song by Chris Tomlin called "My Soul Magnifies the Lord" although all I could remember (and sang over & over in my head was "my soul, my soul magnifies Lord, My soul magnifies the Lord, He has done great things for us, great things for us." I was thinking as I was singing that I didn't feel like anything in me was magnifying the Lord but he "he has done great things for us" was a good truth to remember. In hindsight, our weakness resting in the strength of the Lord does magnify Him so maybe that was just a reminder to me : ) 

I listened to the song yesterday morning on the way to work & then read our daily advent reading during lunch time. We have been reading through Good News of Great Joy by John Piper in the evenings as a couple but sometimes I get a head start so I can think about it a bit.  Yesterday's was titled "Why Jesus Came" & just took me by surprise.

Hebrews 2:14–15 

"Since therefore the children share in flesh and blood, he 

himself likewise partook of the same things, that through 

death he might destroy the one who has the power of death, 

that is, the devil, and deliver all those who through fear of 

death were subject to lifelong slavery. "

Some things it mentioned or brought to mind are:

• In sending Christ, God has the salvation of his children specifically in view- He came to save me, he came to give of himself for our good
• He became fully man and remained fully God
• The reason Jesus became man was to die- this sweet little baby Jesus from our nativity that Charlotte & Eloise tuck under their blankies was born for a specific purpose, to grow into a man, living a perfect life although he was faced with trials of many kinds & DIE!
• In dying Christ de-fanged the devil. How? By covering all our sin- we are protected from Satan! 
• So we are free from the fear of death. God has justified us. Satan cannot overturn that decree. And God means for our ultimate safety to have an immediate effect on our lives. He means for the happy ending to take away the slavery and fear of the now. If we do not need to fear our last and greatest enemy, death, then we do not need to fear anything. We can be free: free for joy, free for others- This is so what I needed to hear yesterday! I am free from the fear of death, I know that God is forming these precious babies in my womb, he knows exactly how that placenta was knit together & knows each day of Owen & Anson's life.  I DON'T HAVE TO FEAR WHAT IS GOING TO HAPPEN!                                                                                                                                          

The statement "We can be free: free for joy & free for others" has been running round & round in my mind.  This is how it is applicable right now at The Valentine Nest. Our next appointment is at 8am on Tuesday, December 18th which happens to be our 8th Wedding Anniversary.  We are free for joy, we are free to celebrate God's faithfulness in our marriage no matter what the findings are.  We could be headed to Houston for fetal surgery (who imagines they will need that?) & be there over Christmas Day.  We are free for joy, free to smile & laugh even if the outcome is heartbreaking.  We are free for joy, we are celebrating the birth of our Savior this season & get to experience Charlotte & Eloise grasping a little bit more of what that really means. 

Lastly, we are free for others.  This phrase is what encouraged me to write this blog post.  Uncertainty is difficult, sadness & disappointment can be consuming but being free for joy helps me to be free for others.  I could keep all the trials we are experiencing to myself but I feel like God has given me an opportunity to share this with others that they may be encouraged to trust the Lord.  Looking into the future a bit, I want our children to be able to read through the story of God's faithfulness someday as we share with them how each were such precious gifts that were prayed for & desired.  I have also been given the opportunity to take in vast amounts of information that will help me as I care for my patients. I am now experiencing that side of a high risk pregnancy both physically & emotionally.  God has made me free to be used for others & I pray that He does. 

My prayer for each of you who read this blog, those who join us in pleading for God to sustain the lives of Owen & Anson is that you would know the love Christ has for you. That you would understand that he was born as a baby to come near to you in a way that had never happened before & that he lived a perfect life, because you can't.  He died for you. He knows you better than anyone ever could & is able to satisfy your deepest needs & desires in a way that no other human can.  This is the God we are clinging to as we take this one day at a time. 

If you would like to read up a bit on the medical side of things, here are a couple links:

Unequal Placental Sharing

TTTS