Wednesday, March 1, 2017

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