Running towards a Rainbow: This IS our normal... you'll want to read this one

Global Running Day - June 1, 2016

To say it's been a while is an understatement. I've been meaning to update, but life has gotten the best of me. Between work, caring for a toddler, and trying to stay sane, there is very little time for writing. I should make time though, it always makes me feel good to clear my mind. School is winding down. It was a rough transition back, but somewhere after January, I managed to find my groove. When I think about this, it makes me feel really good, because the second half of the school year was kind of a roller-coaster, as our life tends to be.

I will admit it - the first half of the school year, I was very unhappy to be back. I felt like I had forgotten how to teach, I was overwhelmed with all that had to be done at home and at work, and overall, just miserable. I couldn't find my balance. I had such a great year on maternity leave and I really missed being home with my baby. I can't really put my finger on when things clicked, but all of the sudden, I stopped feeling miserable. I have a great group of students this year, so that helped, plus I figured out how to get myself organized. I learned my limitations (for example, don´t over-schedule weekends and definitely don't go out of town more than one weekend a month). I've also learned how to be better at saying no. As the year progressed, I was able to see how much Hope loved being at school. She lights up in the morning when I ask her if she is ready to go to school, and runs down the hall to her classroom, squealing and laughing all the way. I absolutely love her daycare and the women who care for her. She has learned so much and grown so much. She has made friends and maybe even has a boyfriend....lol. She's growing up.

After the initial rocky start, things have been good. Life is good. We recently celebrated our 10th wedding anniversary and this weekend we headed back to Bucknell for my 15th reunion - where did the time go?

First trip to the beach this summer - celebrating Mama and Dada's 10th anniversary!

Beach baby

Hope is growing and hitting all of her milestones. She is turning into a spunky little toddler. She makes up for her small size in her personality, which is larger than life. Some of her favorite things to do are singing Twinkle, Twinkle Little Star (loudly!) and sometimes mashing it up with her ABCs, dancing, playing with her farm animals, putting on a coat (or at least trying to), grabbing her coat and saying "bye!", and visiting the various playgrounds around Arlington. She is also quite the avid reader. She enjoys sitting in her chair and reading. She is as easy as ever - eating well and going to sleep easily. She wakes up happy and easily amuses herself with books if we don't come in for her right away. She is a joy to everyone that meets her and its easy to see what kind of person she will grow into. We understand how blessed we are, but we did pay heavily up front for an easy baby. Her health is fantastic. Other than the occasional cold or tummy bug, she is never sick. Even with her being in daycare, I've only had to take her to the pediatrician twice for illness. She is on an annual schedule for cardiology, not needing to be seen again until November and other than early intervention, she sees no other specialists and is on no medication! After months of worry, we have been one of the lucky heart families - getting to carry on with blissfully "normal" life. It has become easy to forget the early days and all that she went through.

Enjoying grilled cheese after her most recent Cardiology appointment (in November!). We are cleared fpr a year!

A recent event has brought us right back though. On a Thursday afternoon in early May, Chris and I took a trip into Children's. This time without Hope. Some of you already know, but the big news is that we are expecting baby girl number 2 in September. I am 26 weeks today and rounding into the third trimester.

I learned I was pregnant in January and for whatever reason, haven't gotten around to telling people or going totally public about it. People we see all the time obviously know, since there has been no hiding it for a while now, but I have been hiding on Facebook, trying to be very careful about any photos that are posted of me. But if you are just finding out through this blog, please don't feel bad. I'm sorry some people have to find out this way, but life has been really busy since I went back to work and communication has been one of the first things to go. I don't know, we've been pretty relaxed about this pregnancy. Hope was such an excitement, after being told we would never be able to have kids, and number 2 just doesn't seem real, even as my belly swells and I start to feel those little kicks, a little stronger and a little more frequently every day. I am beside myself excited but also terrified. I grew up an only child, so I have no idea on this whole sibling thing, though I do know Hope is going to be a great big sister. I am so excited to give her this gift of a lifelong friend and companion (hopefully).

Anyway, back to Children's. When we learned I was pregnant, my midwife strongly suggested that we have a routine fetal echo, just to verify that everything was ok with baby's heart, given our history. She told us it would likely come back normal. This is exactly what Hope´s cardiologist had told us when her genetic mircroarray came back negative for the syndrome most often connected with her CHD, 22q11 deletion (DiGeorge) syndrome. We had something like a 3% risk of having another CHD baby. So I made this appointment, making sure to schedule it with Dr Friedman. On April 22, we went for our big anatomy scan. Baby looked great, however, both Chris and I started feeling increasingly uneasy as the tech spent more and more time looking at the baby, focusing on the heart. And then it took a while for the doctor came in. This sent up the red flags. When Dr Ferres came in, she explained that it looked like the baby has a prominent aorta. Without explanation, we understood what this meant - it was highly likely that baby #2 also has a CHD. There were no tears - just a huge sigh, out of both of us. The good news she was able to tell us was that all 4 chambers looked to be present and symmetrical, which is a huge win in the CHD battle. I really like this doctor. She did one of my ultrasounds with Hope, and will likely become my OB when I make the switch to Beth Israel. She is young and very kind. Anyway, she was happy to know we were already scheduled for an echo at Children's. We had to wait 3 long weeks until our appointment to learn what the diagnosis actually was. Those weeks passed so slowly. Our original plan was to take Hope to this appointment, since it was supposed to be a quick formality and we thought Dr Friedman would enjoy seeing her, one of his success stories. However, when we learned there was a strong possibility of another heart baby, we changed our plans. We knew we had a minimum of a 2 hour appointment ahead of us and knew that would be too much for an active toddler. So we scheduled Chris' parents to come watch her.

On the day of the appointment, May 5, I worked in the morning then came home for lunch and to pick Chris up. We gave ourselves plenty of time, but neglected to check the traffic. I guess we're out of practice. Anyway, there was a huge garbage truck fire in the 93 south tunnel and we didn't find out about it until we were already stuck. We ended up being 20 minutes late, which all things considered, wasn't that bad.

Once the tech started the echo, she spent quite a while, as was to be expected. As she did it, both Chris and I tried to self diagnose, based on our expanding knowledge of CHDs. Then we had to wait for Dr Friedman to come in. This was supposed to be a happy, quick appointment, where we got to catch up with our favorite cardiologist while he gave us the good news that our second child was heart healthy, but instead I will never forget the look on his face when he entered the room. It was one of shock and sadness, so we had our confirmation that something was indeed wrong. He asked us what was going on, Chris told him to tell us. He confirmed what Dr Ferres had told us and we learned we were pretty close with our self-diagnoses. There was a prominent aorta, overriding a Ventricular Septal Defect (VSD), also known as hole between the chambers. What we couldn't see was the pulmonary artery(s) and therefore do not have a final diagnosis. We go back this Thursday, June 9 to see if we can nail down a diagnosis, if not, it will have to wait until she is here and they can do an echo on her directly. What we do know is that it is one of three diagnoses. The first, and least severe, is Truncus Arteriosus. Truncus is a defect that is related to Tetrology of Fallot (TOF), which is Hope's condition. It means that there is a prominent, overriding aorta (like TOF) but that the pulmonary artery comes off the aorta lower down (unlike TOF). The second diagnosis is TOF / PA (Pulmonary Atresia) which is what Hope has. It means there is a prominent aorta, overriding a VSD and that the pulmonary artery(s) come off the aorta higher up. If you're going to have a CHD, this one isn't terrible IF it is as mild as Hope's. The final diagnosis would be TOF / PA / MAPCAs. This is the scariest diagnosis. It is the same as TOF / PA, except there are multiple pulmonary collaterals. The more there are, the more spindly they are and the harder they are to fix. We feared this with Hope, and she is technically mild MAPCAs (she has two PAs and they were a good size, so easier to fix). We are hopeful that it will be straightforward like Hope was. The prognosis is likely pretty good, though all three diagnoses require open heart surgery for survival, likely in the first week of life.

I was happy we had a few weeks to prepare for this appointment. While it was a lengthy, serious exam and consultation, we were able to keep it light-hearted and by the end, we had both Dr Friedman and the nurse laughing. On our way out, we commented that it probably isn't very frequent that parents leave a consultation like that laughing. I feel really lucky to have Dr Friedman as a cardiologist. He, too, is young, maybe a few years older than us and always makes me feel at ease (though sometimes, because I admire him and what he has done for our family so much, I feel like a teenager facing her favorite actor or musician). He is dedicated to his patients, being sure to visit them every day when they are inpatient. As Hope gets older, I am starting to see how fantastic he is with kids. And my favorite part, and this seems to be universal amongst the doctors on the cardiac unit at BCH, is that he treats us as equals, involving us in the process, encouraging us to learn as much as we can about our child's condition. All this really helps us as parents feel more at ease. He has taught us well and he was impressed how much we already knew /remembered at our consultation.

So now the dog and pony show has begun. Since the Fetal Echo, I have had at least one appointment a week. Last week was the first week I had no appointments, but I will make up for it this week when I have two. Usually, weekly appointments don't start until the last month of pregnancy, but I am lucky - I get extra attention. So in addition to my regular OB appointments, I have cardiology and also a monthly growth scan to make sure baby is growing ok. Once we get through this next cardiology appointment, things will slow down a bit, at least until the last month. I am making the moves to switch my care to Beth Israel in August, where I will deliver our sweet little girl, so that she is as close to BCH as possible. Like Hope, she will be transferred immediately, after being checked by the NICU at BI. Chris will stay with her like he did with Hope.

And what does this mean for our family's future? Based on the fact that our second child has a seemingly related defect, we suspect it to be genetic. Likely a deletion or fragment so small that it wasn't caught on the microarray. We will be investigating a little further to see if we can find out what exactly is causing this. We would like to know, because its likely both girls will need to worry about it when they start families of their own. We'd also like to know if there are future health problems / predispositions any of us need to worry about as we age. Children's is just as curious as we are, and we are likely to become golden children to them. We are Dr Friedman's first sibling pair and the nurse told us that they only see a "handful" each year. So we are special.

I am less anxious this time. It's much easier when you know what to expect and you have living proof in front of you that it will most likely be ok. We have an amazing team in place, and while we didn't want to have to use them again, I am relieved we have them. Maybe I am still in shock, as mostly it just doesn't feel real. Most of all, what I feel is disappointment. Disappointed that I won't get to deliver at the midwife-based hospital I so carefully chose and did not get to use for Hope. Disappointed that I have to leave my midwife and head into the big city practice of high risk doctors at Beth Israel (although I did get them to agree to let me stay with my midwife until 34-35 weeks). Disappointed that I will be alone in my hospital room, while my newborn daughter lays in the Cardiac ICU at Children's. Disappointed that I will once again not get to bring my newborn home with me when I am discharged and will instead have to navigate the hospital for a month or more. Disappointed that I will have to spend time away from my toddler while caring for her sick little sister. Disappointed that I will never have a "heart healthy" baby. And most of all, disappointed that I won't get to experience what most people consider normal.

But this IS our normal. We don't know any different and we will carry on in the best way we know how.....

See below for some photos of what is going on in our lives. I also posted another separate blog of just pictures from the end of 2015, if you want to see more pictures

Black Friday Hike #OptOutside

Welcome 2016!

New Years Eve with Pat McGee

Here's to 2016 - if we only knew what was in store for us!

January - 15 months

Happy, Healthy Heart baby

Out enjoying the snow

February - 16 months

Hope started walking this month, in earnest!

In February, we treated ourselves to a splurge vacation in Grand Turk, Turks and Caicos to celebrate our 10th Anniversary. We left Hope home with the grandparents. It was a beautiful place and a wonderful trip.