Day 1 at UCSF/ Ultrasounds & Consultations - 23w/5d

Mom and I took a taxi from the airport to the hospital and got there around 8am. We found the cafeteria, had breakfast and then headed upstairs to the Fetal Treatment Center to check in. Once I was done filing out paperwork, they let us know that we would start our day with the echocardiogram to check on the hearts of the babies instead of waiting until 11am for the anatomy scan followed by echocardiogram. This was in a room right across the hall and the ultrasound went from 9:45am-11:00am. The pediatric cardiologist let us know that we shouldn't actually be worried about Twin B's heart, it was Twin A (the one with all the fluid) that was showing moderate to severe effect from TTTS. This was caused by all the extra fluid that the baby was having to process that puts the poor kiddo at risk for heart failure. She also told us that although that heart showed strain neither twin had any holes or major problems with their hearts and all their movement was a good sign.

So off to the next appointment we went, downstairs to the ultrasound department for the anatomy scan on both babies. We started at 11:10am and didn't finish until 1:45pm. Getting the anatomy of Twin A was tricky because of all the fluid that the baby had to move around in. Sort of like trying to catch a tadpole in a bowl when all you have is a teaspoon. It was definitely long but we made it through 4 hours of ultrasounds by 2:00pm, a mere 6 hours after arriving at the hospital.

Next, we went back up to the Fetal Treatment Center to meet with the High Risk OBGYN. She let me know that I have stage 3 TTTS, very severe. If we do nothing there is a 70% chance that we will lose both twins. Not good odds there. They are recommending laser surgery but I need to see a couple more doctors for counseling before I go in for surgery. The other option is to deliver the babies here and hope that they make it with the help of the NICU but they are already suffering so the chances are not good for that option either. We are moving forward with laser surgery.

They scheduled me for surgery tomorrow and I was admitted tonight. The risks from laser surgery are about 15% (preterm labor, water breaking, emergency c-section) but it is less risk than all our other options. During the surgery they will cauterize the blood vessels that are not working properly with the help of a 3mm optical camera that will be inserted through a port that will be placed on my stomach, straight into my uterus. Although I have a transverse placenta the radiologist found two places where they could easily get to where they need to for the surgery. They will also take the opportunity to remove excess fluid from Twin A and send it off for genetic testing. Removing this fluid should help with all the pain I have been experiencing, at least they hope it will. Once the laser surgery is done we will also have the opportunity to have an MRI done on the twins to see if any brain damage has occurred but that is a decision we make later on.

Follow up after the surgery consists of an ultrasound 24 hours later (Friday AM) where they will check the fluid levels of the twins to see if there is any improvement. If all looks good, we can fly back home Friday afternoon/evening and do follow-ups with my Kaiser doctors in Hillsboro. If things don't look better then we will address that with the necessary doctors and decide the next plan of action.

Mom and I are all set up in our room, we got dinner. More doctors have come by and now we know that the surgery is scheduled for 9:15am tomorrow morning. I've got an IV port in my arm and they've taken my vitals & drawn blood for various pre-op things. The nurse is coming back in at 9pm to give me Colace to prep me for tomorrow and then off to bed it finally is. Haven't slept since I woke up yesterday morning at 8:00am but we have a plan, we have back-up plans, we have a schedule so that helps my stress level A LOT! Typical Type A :)

Thanks everyone for the prayers, support & love! Your outpouring is humbling and I am grateful. We are all grateful. Tomorrow involves some sedation so I don't know when I will be able to update you again but know that when the time is right, you will hear from me. You are all wonderful people and my life is truly blessed by having each and every single one of you by my side. You are my strength.

With love,
Whitney

On a Jet Plane to San Francisco – 23w/5d

It is 6:22am and I find myself at 33,000 feet flying to San Francisco for an 8 hour consultation for laser surgery for TTTS (Twin to Twin Transfusion Syndrome). Yesterday’s ultrasound gave us anything but peace of mind.

For those of you who haven’t been following along, at last week’s appointment the ultrasound tech noticed a large difference between the amniotic fluid levels of the two twins. Twin A had 7 cm of fluid and Twin B had 4 cm of fluid. Although this seems like a large difference it still fell into the “normal” category so the doctor decided to have me come back in 6 days to check the twins again hoping that by then the fluid levels would have been closer together.

Greg came with me to yesterday’s 1:00pm ultrasound appointment and it wasn’t more than 30 seconds after the ultrasound started that we knew we had a problem. Twin A has ALL the fluid at a whopping 10 cm while Twin B had no measureable fluid after 30 minutes of searching. We watched the monitor as the ultrasound tech tried to identify the bladder of this tiny smudge squished up against one side of my placenta. You could make out that there was a head but this poor child has absolutely no room to move while his brother is practically doing somersaults beside him. Twin A has the entirety of the space in my uterus and has abnormally high fluid levels while Twin B is shoved up just below my right ribcage.

Within 15 minutes of beginning the ultrasound, my perinatologist was in the room with us taking a closer look at the images and encouraging the tech to look closer to identify the stomach, bladder & kidneys. (This was information we needed to get to UCSF Fetal Clinic for them to decide whether I needed to fly out or if there were things that could be done by the hospital I was at.) The tech was able to point out the area where the bladder was supposed to be but initially there was nothing there. She found the kidneys and after another 15 minutes was finally able to find the bladder which measured the smallest volume of urine. Twin A measured 1 lb 4 oz while Twin B measured only 1 lb. This put the twins 2 weeks apart in size and 20% difference in overall growth. I had every single indicator for TTTS and we needed to call UCSF Fetal Clinic right away.

The doctor made the call to UCSF while the ultrasound tech finished the ultrasound measurements and report. Then we were taken to another room where the perinatologist met us. UCSF called her back while she was in the room with us and said that yes, we needed to come down to UCSF for a consultation and possible laser surgery to help try to save Twin B. Our doctor answered what questions she could which mainly consisted of questions about what would happen if the surgery didn’t work. Very bleak discussion and I will save those details until we absolutely need to talk about them. For now, let’s just take this one day at a time.

UCSF called us while we were on our way home from Hillsboro to tell us that they had rearranged their schedules so that we could be seen starting at 9:30am the next morning! We would have an 8 hour consultation which breaks down like this:

9:30am – Check in to the hospital in San Francisco

11:00am – 2.5 hour ultrasound to verify the condition of both twins and gain as much information as possible to help them get an idea of the best course of action.

2:00pm – Echocardiogram to check out the health of the hearts on the twins. It sounds like this is mainly to ascertain how soon we need to go into surgery and to make sure that the twins are healthy enough to survive the procedure.

TBD – Consultation with pediatric cardiologist to discuss findings from echocardiogram

TBD – Consultation with perinatologist to confirm next course of action.

If I need the surgery, it will probably happen tomorrow (Thursday) unless signs indicate that it needs to happen tonight. There is a chance that we will be done with everything (including surgery and recovery) by Friday but they can’t say for sure until they get a better look so we are only going to buy one-way tickets.

The surgery will cause me to have contractions, I could go into pre-term labor, I may need to deliver the twins in San Francisco, one twin may die, both twins may die. The possibilities are endless but all we know for sure is that the best chance the twins have is for me to get to SF as soon as possible. They will give me the best care available and they have a whole myriad of options at their disposal.

I quickly called my Mom (who was watching Juniper for us) to let her know we needed to go to SF and to see if she could start looking up plane tickets. Greg and I talked and decided that it would be best for me to go with my Mom to SF while Greg stayed in Saint Helens. This would allow us to keep Juniper on as normal of a schedule as possible. She is really starting to hit the terrible twos so any way we can keep from making our lives more difficult is good.

Greg called his mom who is driving out from Bend in the morning to pick Juniper up from daycare at take care of her while Greg continues to work. They will stay at my Mom’s at night to keep an eye on Nana who is living there. Dad flies back from Denver on Friday and can use the car that Mom and I are leaving at the hospital to get to Saint Helens if we aren’t back by then.

I haven’t slept since yesterday, my eyes burn when I blink because of all the shed tears, I am so vulnerable that I feel my skin has been completely peeled away. I am in a lot of pain, like I have been all week. The doctor says it is because of all the extra fluid pushing my ribs up and out of place. I wish I could say I am comfortably numb but I am far from it.

The plane will land in about 30 minutes. Mom and I each brought a small carry-on with a couple day’s worth of clothes so we can get right off the plane, find ourselves a taxi to the airport and get this day started. We don’t know which hotel we are going stay at tonight but we’ll figure it out at some point today.

Please pray for us. If you don’t pray, please send up hope, courage and strength. I knew this expedition to twins was gonna be a tough one but I didn’t expect to be one of the statistics that you read about but hope you never become part of.

One day at a time, one hour at a time, one breath at a time. I know I am going to be in good hands and that I am doing everything that I possibly can for my poor babies.

God give us strength.

With love,

Whitney