My New Address

We decided to go in at around 26 weeks. ( 26 weeks 3 days) after the 3 day weekend. I brought my laptop and very big wacom tablet so I could work here during some of the time babies are not being monitored. There was no desk in the room so Cary did a quick trip to Ikea, bought me a desk, and built it. I had my first NST. Babies are squirmers and don't seem to like the monitors, they actually try to kick them off. I don't blame them space is limited in there and we are encroaching on their digs. The plan is to monitor 3x a day and try to get an hour reading--- though it ends up being about 1.5 hours to get them on and keep them on. I do one session around 7:30 am, next at 2:30pm and last around 9:30pm. Here I am the first day the first session literally being strapped in.

GOOD NEWS NETWORK

At this point I tried really increasing my protein intake, hydrating more and put myself on a modified bed rest-- no more chasing after Rylan. I was in full on INCUBATE mode. The next week we went to see Dr Harper. She did another ultrasound and doppler. The blood flow had actually improved! We were all surprised and relieved! Baby A is the kicker.. I know she is a fighter!

They both stayed along their growth curve too. I was now 24 weeks and we needed to figure out when I would be going inpatient. This is not an easy decision and Cary and I needed to work it out

Cary's Commentary:

The best thing that happened is that we called Bonnie...Bonnie served as our Doula with Rylan, and is an amazing woman. She was instrumental in supporting Sara with Rylan, and ensuring a natural, vaginal birth. She ran interference with the doctors, helped us labor at home for many hours, told us how to prepare, and was generally a superhero! She even took pictures.

So, in the height of our fragile emotional states, Bonnie came over and helped. She reminded us that WE are in control of the situation, and WE have direct input into our babies health. She gave us the B.R.A.I.N. acronym......

Benefits-What are the potential benefits of this procedure?

Risks-What are the risks of this procedure?

Alternatives-What other options are there?

Intutition-What is your gut telling you? How does mama feel about it?

Nothing-What if we do nothing?

After explaining everything, Bonnie agreed we were in deep. We are potentially facing life changing decisions, and its heavy. However, my main takeaway was that WE can still control the outcome, and WE still have some power here. It's hard not to feel helpless in this situation, but we are not. What can we control?? One thing is FOOD......

With one smaller twin, we decided Sara needs to eat, and eat, and eat, and then eat some more. We need to give that girl every possible nutrient and calorie she can have to grow and grow and grow. So, hundreds of dollars of Whole Foods trips, Sara is eating...and gaining weight. This is good!

What else can we control? Our attitudes. After several months of being pretty overwhelmed, I decided it was time to get a grip, and make the best of it. We are going to make it through this, and the payoff is going to be healthy girls. We went to church 3 weeks in a row.....Then got the good news that blood flow had improved...yay!

BOMBS AWAY

We had been told all along that there was a visible size discordance between our girls though it never seemed to be a big deal. Then around 22 weeks there was a 30% difference between our twins and we were told Baby A had sIUGR ( selective Intrauterine Growth Restriction) This is another complication that MoMos can have and often is caused by an unequal sharing of the placenta.. Baby A was getting the short end of the stick. She then did dopplers to measure blood flow to the babies. More bad news.. intermitten absent diastolic flow was seen. If this becomes reverse end diastolic flow the baby would not make it and because of their situation being so closely tied together this gives the other twin about a 50% chance of survival and if they do survive an elevated chance for brain damage. We were devastated again. Our Perinatologist was very concerned that things could turn from bad to worse quickly. She said if we got to viability we might have to make some hard choices. You have to take both twins out to save them but then you subject both twins including the healthy twin to all the dangers of extreme prematurity.

We were walking on eggshells. And though I have been pretty strong through this all, I had a hard time with this news. I know life just isn't fair sometimes and bad things do happen to good people. Cary and I have both felt so blessed in our lives, It was hard to be up against all this.

Thank God for our 20 month old son Rylan who is my sunshine and comic relief through all of this. One morning I broke down crying on the couch and the little guy came over and started rubbing my arm. It was so heart warming. This has been so difficult but it has also really strengthened my relationship with Cary. I do feel blessed to have such an awesome husband and amazing son. I just want so much for these girls to arrive safe and healthy and be part of our family.

Cary's Commentary:

I am going to say it.... I have come to realize, this whole pregnancy really sucks (easy for me to say, right?!). A high risk pregnancy is fraught with ups and downs, lots of scary things, and complicated emotions. Its not even comparable to a "normal" pregnancy that we had with our son Rylan. In some ways, having access to information (ultrasounds, amnio's, bloodwork, growth measurements) is a curse.....What are you going to do about it?!?!

The SIUGR diagnosis was not ideal, but then again we are in high risk territory anyway, so I shouldn't be surprised, right?!

Ultrasounds every two weeks

We started getting ultrasounds every two weeks. Our Perinatologist who we really like arranged for us to come to the University Medical Center in Aurora where I would be doing my Inpatient stay. We met a partner of hers Dr Schwartz who would be the doctor always on call for me once I was Inpatient as Dr Harper has a few clinics and hospitals she is currently rotating through. We also got a tour of the NICU. This actually took up a good part of the day and when leaving I asked Cary if he wanted to get a bite to eat there and he said no way he was so ready to leave. I reminded him I would be spending months there!

Cary's commentary:

At this point we began "shopping hospitals". Both Dr Porreco's hospital (Pres St Lukes) and Dr Harper's (University of Colorado) are covered under Sara's AMAZING health insurance plan (more on that later), but we wanted the best care possible in the best environment. As we visited both paces, the differences became clear.....Porreco had a smaller, private practice...very high end, very professional, and semi-exclusive. (We had to know someone to even get an appt).....The hospital there was kinda dark and dingy, but the practice seemed solid.

On the other side, we had Dr Harper and the University of Colorado hospital system, a well regarded institution. The rooms were nicer, and it was a bustling University hospital...Lots of fellows, interns, students, and the like coming and going...learning. My mom reminded me that a University "fellow" had saved my dad's life some 25 years ago back in Chicago for a blood clot he had, by being overly inquisitive and digging for information.

What it really came down to is the people. Sara really felt most comfortable with Dr Harper (who had become invested into this pregnancy with us), and thus we chose UOFC.

Finally A Ray of Sunshine!

A few days after the amnio we got the initial results that can tell you if babies have any of the most common disorders like Downs. Our Babies were healthy. OMG what a relief!

AND the best part ... they are GIRLS!!

For Cary he had visions of excel spreadsheets and expenses doubling, fashion, weddings etc.

I was pretty excited! The Hayes boy streak has been broken! Cary has one brother, his father has a brother, I think his grandfather also just had brothers. Now there is not just one girl but TWO!

Cary's Commentary:

The good news of the amnio results was much needed.

When they told us they were girls, I nearly fell out of my chair again. I had this 30 second flash in my brain that consisted of comparing costs of boys to girls in an Excel spreadsheet. Not sure why, its just what hit me. I was thinking about schools, clothes, shoes, make-up, weddings, the whole bit.....Funny. I was happy. I will likely be a very overprotective dad to these ladies.

WHERE IS THE GOOD NEWS NETWORK?

A couple weeks after learning about the twins and madly googling everything about MoMos ( not recommended) we went back for an ultrasound and Quad screen where they take blood and are able to see if a genetic disorder is a possibility. Of course with identical twins a genetic disorder means 99% of the time both have it.

A week later another bomb. I felt like a big black cloud was following us. Our MFM Doctor, the woman who deliver the news of the MoMos called to tell us the blood work came back positive for Downs giving us a 1 in 12 chance they have Downs Syndrome. She recommended an amniocentesis to determine if the twins did have a genetic disorder She told us there were also some disorders that could end in stillbirth and after a very involved pregnancy a long hospital stay and all the stress, that would be tragic. We went in that day for the amnio.

She took a very long needle and stuck it in my belly to extract some amniotic fluid for testing.

We were able to watch the ultrasound as she did this and poor baby B kept backing up into the needle. It was frightening to watch. After it was done the assistant said "Are you ok, do you need to sit down?" I thought she was talking to me but she was talking to Cary, who was ghost white.

Now more waiting.... This was right around Christmas and we were going back to California to spend xmas with my family in Paradise. I really hoped we would have the news before we left so I would not be stressed the whole time I was on Holiday.

Cary's Commentary:

The first week or two after we learned we had Momo's, I spent many late nights Googling everything about Momo's. Its a relativly new science; 30 years ago before ultrasounds, people didnt know they had Momo's until birth, and 50% of them died at delivery. Therefore, most of the info on Momo's is relativedly new.

The "benchmark" study for Momo's, called the "Heybourne study", talks about how inpatient monitoring of the Momo twins significantly increases survivial rates. By checking yourself into the hospital, and closely mointiroing the babies for the myriad of issues they can have (including cord compression, Twin to Twin transfusion syndrome (TTTS), Intrauterine growth restriction (IUGR), Pre term labor, pre ecclampsia etc etc etc) you are able to make better decisions and have better care options.

Ironically, we discovered that Kent Heybourne, the author of the study, worked under Dr Richard Porreco in Denver! Our friend Michelle was pregnant with twins in Boulder, and her doctor was Porreco. So we scheduled a visit with Porreco for a 2nd opinion.

Once we saw him, he confirmed the diagnosis of Momo twins...

The amniocentesis was rough. We had recieved a 1 in 12 chance of Downs's syndrome from some early bloodwork. Anytime you have a child, you always run risks. They usually go up with age. With Rylan, we had also had some sketchy bloodwork with elevated chances of problems, but had faith and optimism that everything was fine, and in fact everything was.

I watched in as Dr Harper plunged a super long needle into my wife's belly, and watched on the ultrasound screen as the needle entered the womb and parked right next to baby B to start extracting fluid. Baby B did'nt like it: She starting flipping and flopping and banging her butt against the needle (I wonder if she's have a scar)...The whole thing was fairly traumatizing. I turned white and had to sit down.

Loading the Roller Coaster

At 15 weeks we went to our first trimester screening. They recommend these for mamas over 35.

The ultrasound technician lubed me up, put the wand on my belly,and just as Cary and I saw the baby a 2nd little head floated into the picture. At the exact same time the ultrasound tech said "Are you aware....... there are 2 in here!" I think Cary almost fell out of his chair! It's a crazy moment when you here news like this and you enter a sort of time freeze trying to wrap your head around it. It's a mixture of shock anxiety and excitement- quite the cocktail of emotions. I thought to myself.. someone up there has a sense of humor. Cary often said our goose was cooked after Rylan since we no longer could have our all day outdoor adventures. Its like God said.."here let me REALLY cook your Goose!" But seriously I was pretty excited too.

Then came the first bomb. The technician left to get the Maternal Fetal Medicine Specialist. She told us our twins are identical. They are a VERY rare twinning, something around 1 in 60,000 or 1% of all twins. Cary and I managed to hit the statistical JACKPOT!

She said our babies share the same kitchen and the same bedroom--making them very high risk due to many possible complications.The main one is cord accident as their cords can get tangled , knotted, and compressed which can cut off oxygen and nutrients and out the babies in distress. They are called Monochorionic, Monoamniotic twins... aka MoMos.

A good explanation is here http://www.facebook.com/pages/Momo-twins/110266742335294

They used to have about a 50% survival chance but with aggressive monitoring the success rate is closer to 80-90% Momma going Inpatient and living in the hospital around viability 24-26 weeks where they can be frequently monitored greatly increases their chance of survival. They are always delivered via C-Section sometime between 32-34 weeks because they are believed to be safer outside than in at that point. If distress is seen earlier they will take them out earlier.

This was going to be a long hard journey!

Cary's Commentary:

When Elly, the ultrasound tech asked "Are you aware there are 2 in there?!?!" I nearly fell out of my chair.....The joy, shock, awe, and excitment lasted all of 5 minutes. Thats when Dr. Harper came in and said "I'm about to rock your world.....This is NOT a normal pregnancy, this is a high risk pregnancy. You have Monoamniotic twins, which are rare....They have serious complications and you are going to be in for a rough ride, filled with lots of stress, uncertainity, and tough decisons."

Ouch. The excitment was quickly replacing by fear, sadness, and shock. Our son Rylan was a totally normal, beautiful pregnancy and birth. This was going to be very different.

Feeling pretty darn sick..what is up?

The week after our climbing trip, which by the way involved a lot of sleeping in and a much more mellow climbs, I started feeling nauseous. Not just a little nausea but full on- all day- kissing the porcelain god nausea. I was sick when I was pregnant with Rylan but this was INSANE!

I went to my first prenatal appointment. The doctor gave me an ultrasound while talking about how she was more shocked when she found out her twins were boys than when she found out she was having twins. Maybe this distracted her but she reported to me heartbeat looks strong, BABY looks great! Estimated due date May 24th.

hmm why was I so sick? Maybe I was having a girl?

Cary's Commentary:

Our climbing trip to Red Rocks, NV was fun, and in some ways a repeat of our 2009 Yosemite trip. Both times, we had recently learned that Sara was pregnant, and thus I could'nt throw her on the sharp end to lead those scary 5.10+ pitches up high.....So it was one me to take the sharp end again.

The crux moment of the week was when we were about 8 pitches up on a Red Reds classic moderate, Chrimson Chrysalis. It was late afternoon, and the wind picked up to turn a hot day into a cold afternoon.....With about 800 feet of air under our feet, ropes getting tangled, and thoughts of rappelling down in the dark trying to find rap stations we called it a day.....Sara's pregnant...WTF are we doing up here!?!?

Convincing Cary to try for #2

I wonder if Cary wishes he never said this. "Once Rylan consistently sleeps through the night ... no more 5:30 am wake up calls (cries), he'll consider trying for number two." That was August. The next month as a gift for my very BIG birthday Nana and Grandpa flew out to take care of Rylan for a week so Cary and I could celebrate somewhere together. Why we did not pick a beach destination? I do not know! We booked a trip to do some 'Adventure' Rock Climbing in Red Rocks, NV- about 25 minutes from the Vegas strip. Cary got busy putting together a tic list of climbs we 'may' have gotten up in our pre baby life. I figured since Cary likes to put me on the sharp end and I was a couple days late for my period and since I had some tests in the drawer from pre Rylan days. I'd take a test. Being that we did it like maybe once??? I was super surprised to see 2 VERY pink lines. Pregnant? Really??