Running towards a Rainbow: June 2016

Proud big sister checking out her new ride

And just like that, I've entered the third trimester. For the Facebook world, this happened really fast. For me, not so much. I found out I was pregnant on January 7th, so shortly after the New Year began. This means I have been pregnant for ALL of 2016. I have been pregnant for half a school year (we were still in second quarter when I found out). I am at that point where I forget what it is like to not be pregnant. But aside from all this, it has gone relatively fast. While this pregnancy has not been as easy as Hope was, I still have it easy compared to many pregnant women. Mostly, I actually like being pregnant. Having gone through what we went through to have Hope and how much of a miracle it is that I am pregnant again, I am trying my best to embrace and enjoy the blessing that this pregnancy is. So many women don't get to experience this miracle, so I try to enjoy it in their honor. But being pregnant while working full-time and caring for a toddler is no joke. During the first trimester, I was sicker than I was with Hope. Food was not interesting to me at all, and vegetables that I usually love were downright repulsive. I was not hit with the exhaustion I had with Hope, but I was still pretty tired. The food aversions lasted well into the second trimester, and up until recently, I really just felt bad more than I felt good. The second trimester was filled with migraines, which are less than pleasant, especially since there's nothing that seems to get rid of them other than sleep, which I don't often have the luxury to do. I hope to escape those as I enter the third trimester.

I am proud of myself though. I made it to work every day, except the days that Hope was sick and I had to stay home with her. I kept running and I am still running today. With Hope I ran a half-marathon at 7 weeks. This time I ran two - one at 12 weeks and one at 21 weeks. Running a half-marathon at 21 weeks was a huge goal and really kept my eye on the prize. I am no longer running much more than 4 miles at a time, but I am happy to at least still be running. The next goal is 30 weeks, and that is only two weeks away. As summer begins though, I know I will be much more guided by the weather than I have been to this point. I won't run if it is 80 or above.
I am happy to have finally reached the third trimester. It feels like the home stretch. 10 weeks from now, the summer will be over and we will be a week away from meeting our second child. It feels unreal and I'm still struggling to accept that we will have a second.

There is still a lot of uncertainty surrounding number 2. We went back to Children's on June 9th to see if Dr Friedman could find anything else out. The echo itself took an hour and a half. This is a long time to be on a table with someone wanding your belly. He was able to find a pulmonary artery - at least he thinks. Basically, he was able to rule out the best case scenario (Truncus Arteriosus) and the worst case scenario (no pulmonary artery, lots of tiny collaterals instead (severe MAPCAs). So we're left with Tetrology of Fallot with Pulmonary Atresia. This is the same condition that Hope has. What we don't know is how severe it is. Textbook Tetrology of Fallot is pretty straightforward. Add the pulmonary atresia, and it becomes a bit more complicated. Here is a really good write-up of facts from the CDC on pulmonary atresia. What we don't know is how severe it is. Hope was relatively mild as far as TOF / PA goes, but it's still considered a "complex congenital heart defect" or a "critical congenital heart defect". The thing they worry about most is the collaterals that form off the aorta. If there are too many of them, they are small and spindly and don't allow blood to flow easily. This is called MAPCAs. Some doctors would classify Hope as MAPCAs, some wouldn't. She has two pulmonary artery collaterals, so they were nice and wide and it was easy to reroute them and make the blood flow in a way that her heart can function well. Our plan of action will depend upon the width of the pulmonary artery - it looks to be pretty small, but not unworkable and the number of collaterals, which we haven't been able to determine. If her anatomy is like Hope's, they will operate within the first week and perform a complete repair. If it is more complex, it is possible they will actually send her home with the hope that her collaterals will grow. The more complex it is, the more procedures she will need because it will have to be done in stages. We will go back on July 21 to see if we can see anything more, though it is pretty unlikely. This will also provide us the opportunity to review logistics and prepare for delivery.

This afternoon, I start my 2 week visits with my midwife. I will be staying with my midwife until I am about 34-35 weeks and then I will make the switch to Beth Israel. This will be shortly after my next visit at Children's. Once I move over to the BI, I will be going weekly and getting weekly ultrasounds. As it is right now, I am getting monthly ultrasounds. We really don't learn much at these ultrasounds. They are basically checking to be sure she is growing properly, though there's not really reason to think she wouldn't be.

As the school year winds down (today is our last day!), people keep asking what my plans are for the summer. My response is doctor's appointments, lots of doctor's appointments, and a few trips to NJ, but mostly just laying low / getting the house in order and ready for baby...nesting, I guess. I am happy to have the summer off, but sad to see the school year come to a close. As challenging as this year was, it is ending on a very positive note and I'm a little sad that I won't be there that long next year. As I said good-bye to my kids, I felt a little teary knowing I'd only see them for one day in the fall. I have to admit, the timing was pretty lousy...but, I know better than anyone that it was out of my control, lol. It is nice however that I won't have to work more than a week during the third trimester. My plan is to lay low and do all I can to relax and prevent preeclampsia. I really want to make it to 39 weeks. I want this baby to be born in September and not August.

I also want to do a lot of fun things and make a lot of memories with Hope. These are the last weeks it will just be she and I during the day, and I want to savor it and make it as special as I can. She won't remember it, but I sure will. I will take lots of pictures to show her how special this time was for me when she gets older. Field trips to the zoo, Boston, the beach, Walden, etc. I'm looking forward to doing some special things on the weekends as a family too, while life is less complicated. The fall will be tough, and busy, and there won't be a lot of time for fun activities until the baby comes home. We have no way to tell when that will be, so we're trying to pack it in now.

Hope continues to do well. She's starting to climb - which is really exciting! Most people would be terrified, but I know it's an important skill for her to learn. Up until recently, she'd ask to be lifted, now she is doing it on her own! She's also talking a lot. She's starting to use her words more and starting to get less frustrated with things as she is able to communicate better. She's still a little behind - she's doing things most 18 month olds do at 20 months, but this makes sense to me, given her start. Since she was born, she's always done things on her own time.

That's the news from the Crellin family!

Here are some photos:

Always Happy

Walking to dinner with Dada

Checking out the double BOB

It has Buckles!!!

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.