takin TTTS out back

It is day 5 after LAS and we're all doin well, no complications or scares. I have been on bed rest and attempting to eat 3000 calories a day. Ryan says, "I wish I were pregnant with twins, sounds like a vacation" >:o ...he really does know better. It hasn't been too too hard yet, I have had visitors and been catching up on thank you cards, and touching base with friends. My back is very sore from not moving much, but Im just glad Im not doing this in the hospital.

Im angry at TTTS for what it took from me in this pregnancy:

- optimal health for my girls 

- my hopes of having a low intervention pregnancy and birth- HA!

- the chance to ever have a vaginal birth

- peace of mind

- the ability to prepare the nursery I had been wanting, particularly sanding and painting a yellow dresser/ changing table

- the ability to move homes in order to prepare for them

- the opportunity to travel for showers

- the ability to be semi-functional so that Ryan wasn't so overwhelmed

- the opportunity to be as involved in RUF this semester

Im thankful the Lord allowed it stop at that!

TTTS Laser Ablation Surgery

The reason I am doing this post is because when I was diagnosed I was desperate to find a TTTS blog that shared what the LAS was like from a person who experienced it and could not find anything. Here was my experience of it:

There are only 4 or 5 centers in the country that perform this cutting edge surgery. We were so thankful to be within driving distance of Texas Fetal Center in Houston. Co-Surgeons Moise and Johnson are internationally recognized and pioneers in the field, and I knew I would be in good hands. I believe I was their 353rd LAS.

The first day was evaluations and consultations. There was about a 11/2 hour ultrasound to determine whether or not we could be candidates for the surgery. Then we spent about an hour discussing my case and the risks involved to mother and babies. After answering millions of questions from us, we mutually decided that LAS was a fit for us.

 After being admitted to the hospital, I was prepped for surgery. They did a quick ultrasound to confirm the positions of the babies and their heart beats. At this point, I believe we were in stage 3 (out of 5) of TTTS.

 After taking a disgusting shot of some medication that tasted like gasoline and is supposed to help with stomach acid, they hooked me up to the IV, which was one of the most painful parts. The anesthesiologist came in and rather quickly gave me my "martini" via IV. This did not put me totally under, but put me into a twilight sleep. This for me was the scariest part because I felt so out of control and unable to communicate- I hated the feeling! Then they rolled me into the OR. I remember most things I think. I remember lots of people fussing with me and talking to me- hooking me up to machines, putting different monitors on me, trying to adjust my body on the table because I had to be sideways at just the right angle. I remember the room being super scary with lots of big machines and lots of people. I remember it was freezing. I was SO afraid. I tried my hardest to keep my little eyes open to stay aware. I was able to open them whenever I wanted. The best part of the surgery was the nurses. They were so wonderful and held my hand the whole time. They also talked to me the whole time and told me I was doing well and so were the girls. I am so thankful for them! The surgeon made one incision about the size of a drinking straw on my side. I did not feel any pain as the fetoscope went in, and mid way through I was no longer afraid at all. After about 45 minutes, the surgery was over. They put a stitch or 2 in my side and a heart shaped bandage over it. They let me know that they sealed 9 arteries total, 5 big ones. The anesthesia wore off quickly and I was moved to the recovery room. I was starving because I hadn't eaten in about 16 hours, and so I vomited. They monitored me for contractions and took my vitals often and after about 2 hours took me to my overnight room.

 After arriving to my overnight room they finally allowed me to eat. That was the best graham crackers, OJ, fruit, yogurt, and muffin ever! I felt so nourished after that. They gave me a few bags of antibiotics through the IV, and I also took some medication for contractions. I felt so tired and of course so very happy and was not really able to take a nap. I watched a little Ellen, read some FB comments & texts and enjoyed some treats from gift baskets, the beauty of my bouquets. I did have some pain/soreness around my incision site and found it difficult to get up or move positions. I slept a few hours through the night and before I knew it, it was morning!

Around 8am the ultrasound tech came in to do my morning ultrasound and see how the girls were doing. They looked good and so did I, and so they released me from the hospital to their office for a more extensive and final ultrasound. The prognosis is good they said and sent us on our merry way hoping to never see us there again. We gave our treatment team big genuine hugs and thank yous and told them we would be in touch (as we are part of several research studies with them). I will always remember these faces! So thankful to this team, so much love to them!

Adios Houston

We're home! Welp, we drove into the darkness on our way there and came home in the sunshine! So very thankful to have had a good night last night and be safe at home. I do miss my treatment team and feel a bit nervous being so far from them, but know I can call if I need anything. What a week! My mother-in-law is staying until tomorrow and I am so glad she is with us. I'm on cloud 9, so happy and thankful for these girls! The doc said he thinks they will be toe heads too! I can't imagine having blondies.

24 hour marker- check.

This post is going to be brief because I didn't really sleep last night and am in some pain/discomfort, but wanted to give you a quick update. the second marker of success is getting through the first 24 hours. we made it! I did have a few contractions last night, which is pretty normal, but they gave me medication to relax my uterus and it worked. the hospital stay went as well as it could have gone, the night full of interuptions and sweet care. i was so thankful when morning came, and I knew i could be leaving soon (and get that freakin IV out of my arm!). The doc came in and did a quick ultrasound and saw that everyone's heartbeats looked good and the girls were partying. they were literally stacked on top of each other, and baby A even doing rolls over baby B- poor little thing. After we were discharged, we went back for a more extensive final ultrasound, where they found that baby B already has more bladder flow and there is less of a discrepancy between the fluid levels. I am on bedrest now for the next 7ish days, and then I will be on a modified bedrest. I took a long nap this afternoon at the hotel and we plan to stay here one more night and head back to cow town in the morning. Ryan's mom is going to be coming back with us to help us out for the weekend and she will take off sunday.

I can't believe its over, I can't believe it even happend- it all kind of feels like a dream now. I feel so thankful to God for His mercy and so happy that there is a great chance now that I will have 2 heathly girls. I feel closer to them and more maternal than ever before. I do feel able to exhale and rejoice, but to be honest, I also have some lurking anxiety about what the next 10 weeks will bring. I do feel hopeful. Alright, more reflections, and more on what the surgery was like to come. My brain feels like mush and so Im going to get going and get back to you later.

Thank you over and over- we have read all of your sweet comments and are so honored to be followed by you. Praise Him!

xoxo

Hugs and Drugs (or, Surgery Went Splendidly!)

As I type, Laura is trying to get some Z's. She's chilling out as some drugs wear off. She went into surgery at about 10am and came out close to 11:30. Dr. Moise came out and talked to me afterwards and gave nothing but a fantastic report. He said (I'm paraphrasing), "Everything went great. She's (Laura) doing well and we've got good heartbeats out of the girls (twins)." In my mind, I'm leaping...giving thanks to God for His steadfast love and mercy. I asked Dr. Moise, "Are you a hugger?" and he replied, "Yes." So, with my body, I wrapped my arms around the head and neck of the man who just promoted life as best as he could. And then I began to weep. In fact, he mentioned that the donor twin had more placental mass than he had first anticipated. This is a fantastic sign, something that contributes to a longer gestation. Loads of your (and ours) prayers answered today. Thank you a million times over!

In short, Laura is doing great and so are the twins. We've got other hurdles to cross (when we get to them), but for now, we can exhale. God is (and always has been) kind. Our circumstances do not change His character; in fact, I've realized that I'm only able to make sense of my circumstances in light of His character.

Thank you so much for all your prayers. I've been overwhelmed as I've read about prayers coming in from all over the States and even as far as Great Britain. God has been kind to us through you. Many, many times the two of us have just stopped and marveled at the prayers and support that people have offered. I know that we've not been able to answer each one of your comments, etc. but please know we've read them and that they have been a blessing to us. Please continue to pray for us; we'll continue to keep the updates coming on the blog. And, please, share this good report with those to whom you've shared our story. Post it on Facebook; Tweet about it. We want folks to know that God has been kind to us and that their prayers really have mattered. We're so grateful.

So, celebrate with us. Share. Thank God with us. Tell of His compassion and wonderful grace. I only hope that in the weeks, months, and years ahead Laura and I will be able to love on you like you've loved on us. We've needed it and been blessed by it. Until the next entry, keep praying. 

Ryan

wednesday waiting

I slept well last night- so thankful! Today, we wait for tomorrow. The forecast is rain and hail- a good day to stay in and relax.

One of things I have been excited to do with the girls is have dance parties (particularly to Beyonce 'single ladies' :))- so, this morning I decided that it was something I wanted to do with them today. Ryan didn't have Beyonce, so we danced to Tiao Cruz 'dynamite' instead (don't worry, I didn't jump around too much). I thought this might be a good way to stimulate them and keep them active too. Im pretty sure they loved it. 

Im both afraid and excited to get into surgery tomorrow and rescue our babies. I have to say hope is exhausting, but I have to continue to do it. I think they will make it, both.

Success of the surgery has a few different markers:

1- immediately after surgery if everyone is alive

2- 24 hours after surgery if everyone is alive, if this is the case it is probable they will make it to birth (barring other complications)

3- 1 week after surgery if there have been no major complications (preterm labor, bleeding, fluid leaking, etc)

4- 28 weeks = HOME RUN!

They say that the rule of thumb is that the babies will come 10 weeks after laser surgery (they aren't exactly sure why). That will put me at 30 weeks of pregnancy and they should be able to survive (especially because they are girls- seriously.) This will be the first week of April.

I cannot believe they may be here so soon! Holy smokes, I haven't done anything and I'll probably be on bed rest. At least I would have them and they will probably be in the NICU for a month or so anyway. 

What a nightmare this pregnancy has been. I just went back and re-read my blog from the beginning- it made me cry, but my old posts encouraged me that the Lord has been near this whole time. Check out my very first post here.

friends, yesterday alone we had close to 3,000 page views of our blog. we are honored and humbled that so many are following our story and offering support. thank you to so many for disseminating our blog as it increases the number of prayers.  please pray for tomorrow and we'll keep you updated. 

Big Day: Done

All,
Ryan here...I've stolen the password to the blog to give you an update while my 'champ' wife takes a nap. Thanks so much for all your prayers, comments, texts, emails--someone sent us a new car!--just kidding but not a bad idea.

First of all, no surgery today. That will happen on Thursday, but more on that later. We met with Dr. Moise (and his staff) here in Houston. They were wonderful and incredibly comforting. They provided us with much-needed info for us to move ahead. Laura had an ultrasound that lasted a year and then we met with the doc and he consulted us about surgery.

Here is what is happening to our twins...We are in stage 3 of TTTS. As Laura may or may not have mentioned, they wait until stage 2 to do surgery. So, what does this mean? It means that the recipient twin is basically owning the womb and the donor twin in losing space to 'swim' in. The babies show no signs of heart failure or neurological defect. As you could imagine, this is a HUGE answered prayer. Puh-lease, keep them coming. In the ultrasound, it was funny to see that the 'bigger' twin kept kicking her sister in the face. This activity, however troubling it may be in the years to come, is welcomed now. It keeps both of them moving and active. Sadly, though, our 'little' twin is losing activity in her bladder and not having healthy, continuous blood-flow. These are some of the key factors that doctors use to assess whether or not to operate.

So, we'll (okay, clearly not me) have some surgery on Thursday at 10 am. Again, please continue to pray for us. What will they do? Well, they'll go via fetoscope and get a look at the placenta. There are (potentially) numerous blood vessels that are shared between the twins. The doctor will laser those shut and effectively create two placentas out of one. (Who thinks of this stuff? We're grateful for God's grace to smart people to think of this stuff!). This should take about an hour and a half. We'll spend the night in the hospital and then come back home, hopefully, on Friday.

If you are the praying type, please continue to pray for us. Pray that the doctors and their staff would be sharp and exercise their tasks skillfully. Pray that God would comfort both Laura and me as we choose this surgery as a means to saving our girls. Pray for the life of these little ones too. While preterm labor is almost a given, we'll worry about that later. For now, pray that they would come through a pretty traumatic surgery. Pray, too, that the bigger sister would take it easy on her co-twin.

Wow! So, I know this was a long post. We're incredibly grateful for your prayers. Laura and I counted up that we've got close to 2000 folks faithfully going before the throne of grace for us. We're humbled; we're blessed. God is kinder than we could ever imagine, no matter what. Grace and peace to you all.

Ryan

Big Day

Deep breaths. Barely slept last night. This is happening. I find myself continually trying to ground myself in reality, "ok, we are Houston, in the medical center because I am a patient and I have a disease and 2 sick babies and I am getting surgery." so surreal.

We got in late last night. Ended up not being able to get out of town until after 5pm- as the night progressed, we drove further and further into the darkness and uncertainty. I have experienced all kinds of fear in my life, but never quite like this.

I begin a day of testing and evaluations today at 830am. If they decide that I need emergency surgery, they will do it today- if not I will have to wait until Thursday (they only do this surgery tuesdays and thursdays).

I am thankful to finally be here in good hands and get this show on the road. Ryan's mom is coming in today too, I'll be happy to see a familiar face (my mom got surgery recently too which is why she will not be able to come).

Alright, here goes nothin- its in Gods hands.

Thank you for checking on us!

Heading to Houston

Im going to be brief, because I am so worn out and discouraged. The appointment this morning did not go well, TTTS is progressing quickly and we don't have much time. They told us we needed to head to Houston today.

I feel so weak. Vomited in the exam room this morning, so tired emotionally and physically. They say sometimes moms take on the symptoms of the babies. 

Trying to function enough to pack and get out of here smoothly...

Continued thanks for your love and support this morning

I'll try to update again soon. 

my sadness

The helplessness might be the worst part. Im not sure how to care for the girls or give them comfort. I wish I could see them or hold them. I wonder if they are scared, or uncomfortable in their bodies. I wonder how this experience in utero will affect them after they are born, their bodies, their personalities, their roles, their relationship to each other, their relationship with me. Ryan and I tried to comfort them the only way we knew how which was to just talk to them.

We told them that we loved them and we were so sorry this was happening to them, we didn't know why. We told them we were going to do our best to make good decisions and take care of both of them. We told them that the Lord loves them way more than we even can, he knows them, and that He is with them. He is a much better parent than we would ever be, and they will be cared for. We told them to be strong and fight for their lives, that we were for them. We told them we would meet face to face sooner or later. We sang Jesus loves me.


I have felt resistant to being comforted by God in this, but I allowed Him to comfort me with this Psalm.

Psalm 77

  “Will the Lord reject forever?
   Will he never show his favor again?
⁸ Has his unfailing love vanished forever?
   Has his promise failed for all time?
⁹ Has God forgotten to be merciful?
   Has he in anger withheld his compassion?”

 ¹⁰ Then I thought, “To this I will appeal:
   the years when the Most High stretched out his right hand. 
¹¹ I will remember the deeds of the LORD;
   yes, I will remember your miracles of long ago.
¹² I will consider all your works
   and meditate on all your mighty deeds.”

 ¹³ Your ways, God, are holy.
   What god is as great as our God?
¹⁴ You are the God who performs miracles;
   you display your power among the peoples. 
¹⁵ With your mighty arm you redeemed your people,
   the descendants of Jacob and Joseph

He is strong

JESUS LOVES ME THIS I KNOW

FOR THE BIBLE TELLS ME SO

LITTLE ONES TO HIM BELONG

THEY ARE WEAK BUT HE IS STRONG

YES, JESUS LOVE US

YES, JESUS LOVES US

Twin to Twin Transfusion

Thank you for checkin in on us, it means alot! We got some really hard news at our perinatal visit this morning. Our girls were diagnosed with Twin to Twin Transfusion Syndrome. One is 1/2 the size of the other at this point. Neither one is in a healthy place; the bigger one is way bigger than she should be and has so much fluid around her that she is at risk for heart failure, the other is very small and has low blood flow and is developing alot slower. The doctor let us know about 3 treatment options from least risky to most aggressive, and because our TTTS is so severe they are wanting to do the most risky and aggressive treatment, which is Laser Ablation Surgery. They will make an incision into the uterus with a fetoscope and laser the arteries between the girls allowing them to grow independently. This is risky because of increased risk for infection, breaking membranes, and the trauma of the surgery can cause one/both to immediately pass away. If I do not do this, it is likely that neither will make it, or I will have preterm labor and likely have 2 disabled children. With this surgery, there is a 70% chance that I will give birth to 2 babies. This syndrome also puts me at higher risk for preterm labor, and the doctors will be happy if I can get to 32 weeks.

If the surgery is successful and the rest of the pregnancy goes well, the babies should be healthy and normal. But, if they are really premature, there is a good chance for some kind of abnormalities, etc.

 I think we will go ahead and do the surgery, which will be in Houston next Wednesday. I have 1 more appointment monday morning. They will double check that Im safe to travel, and also see if there have been any positive changes over the weekend. If so, then I may not have to go, but they told me i should probably plan to go.

Ryan and I spent the morning in tears and confusion and anger and exhaustion. I haven't totally wrapped my mind around it, but im scared and sad.

Even if you are not a praying person, will you please pray for all of us? Im really scared, but know the Lord is good and with me even if the worst happens.

please pray:

1- that by monday there is a miracle and the girls have less of a weight gap between them

2- the surgery goes well and we all come out alive

3- i have a normal pregnancy the rest the time and do not have preterm labor


to watch an informational video on TTTS and laser ablation surgery click here

Thank you so much for you love, prayers, and support!

stay tuned all next week, as we will put up updates of the latest news on this blog