Wednesday, September 10, 2014

Back to the grind

We've officially entered the single digit countdown.  8 weeks and 1 day left!  More on that later.

Though you wouldn't know it from last week's weather, summer came to an end two and a half weeks ago for me.  Teachers at Malden Public Schools go back to work the Monday before Labor Day, and kids start to return on Tuesday.  High school kids don't come back until Wednesday and even then it is only Freshmen.  The whole school comes back the Thursday before Labor Day, we run through the entire schedule, and then get Friday and Monday off.  Last week was the real deal - the beginning of teaching.  This coming week will be the first full week.  So far my classes seem to be good.  I like my students and it makes me sad I will not see them through the year.  The being back on my feet all day is a challenge.  If I don't remember to sit as much as possible, my feet and ankles swell.  My back hurts sometimes at the end of the day.  But overall, I don't have too many complaints.  I'm not as tired as I expected to be and I still love being pregnant.  I can't believe that there are only 8 weeks left!  As excited as I am for baby girl to be here, thinking about not being pregnant anymore makes me a little sad.  Unlike those who have not experienced infertility, it is not guaranteed that I will ever experience this again.  In fact, I have to think like I won't, but try to be hopeful that I will.  It has been a magical time.  

In other news, we have finally started on the nursery.  We had some time over Labor Day weekend so we moved some furniture around to start clearing the room out.  There are still a few things that need to be moved.  The furniture is set to be delivered in two weeks.  I have washed all the sheets and all the clothes I have received so far.  This weekend we ordered a glider for those late night feedings and rockings.  Things are coming along.  Maybe it will actually feel real when the furniture arrives and the room is ready for her!  I keep thinking certain milestones will make it feel real, but it continues to feel like a dream.  This seems to be common for those of us who tried for so long and struggled so much to get here.  

Two weeks ago we had a few appointments.  I had my first appointment at my new doctor.  Unfortunately, he had a family emergency and the office switched my appointment, but I never got the message.  They squeezed me in for an ultrasound and an exam with the nurse, so at least I didn't go all the way there for nothing.  It is not an easy trip in to see the doctor.  I have to see him at the hospital and the hospital is in downtown Boston.  Originally they were talking like they wanted me to come back two days later.  I was not happy about that since I had already left work early (On the first day, no less) and knew I was going to be getting in late on Wednesday.  The appointment itself went ok, though I was disappointed not to see my doctor.  It took them about 45 minutes before they called me in.  Then they did the ultrasound and it took about 20 minutes for a doctor to come in and see me after the tech examined me.  All went well in the ultrasound.  Baby girl weighed in at 2lbs15oz, which was right on target.  We could see her making breathing motions and the tech said her movement was good.  As is typical of this child, we were unable to see her face.  She was facing the wrong way this time, so no pictures.   Then the nurse did my exam.  She weighed me.  As most of you know, I have been pretty careful about my weight so when she asked me if 177 sounded about right, I was shocked.  She explained that different scales weigh differently.  Obviously I know that.  Since this was my first appointment, she didn't know what my weight was at my appointment 3 weeks before - it was 163.  Needless to say, I was a little freaked out.  14lbs in 3 weeks?  I didn't feel like I had gained that much.  The nurse went about her business and moved on with the appointment, but I couldn't let it go, it was really bothering me.  So I asked her about it again, and explained that my weight had been 163 at my last appointment.  So she double checked it.  Turns out she had read the scale wrong and I was 167.  I'm glad I asked, because otherwise, it would look like I lost a bit of weight at my next appointment. 

Two days after that appointment, we had our follow-up at Children's.  Once again, they did an echocardiogram, and once again, baby girl was somewhat uncooperative.  After the echo, we sat down with the doctors and they went over the diagnosis.  To recap, at the last appointment, they thought it was a different diagnosis than the current diagnosis.  They called us later that day with the current diagnosis.  So at our follow-up, they were trying to confirm this diagnosis.  They feel pretty confident that they are right, but can't be too certain on the details because it is hard to see on a moving baby inside the belly, especially one as feisty as our daughter is.  Overall, the news seemed to be good.  The best thing to come out of the appointment, is that they actually think there may be a possibility that she comes home with us shortly after birth and will have the surgery later.  This would be best case scenario.  Essentially, there are three scenarios with Tetrology of Fallot.  The simplest form is simple Tetrology of Fallot.  This is still a major heart defect, but is easy to fix and most Tet babies go on to live healthy, active lives.  Shawn White, the olympic snowboarder, was a Tet baby!  We are pretty certain it is not that simple with baby girl.  The second scenario is TOF with Pulmonary Atresia.  Essentially, this means that the pulmonary artery is not hooked up where it is supposed to be, but instead coming off of the aorta.  This is what baby girl has been diagnosed with.  The question is whether she has one pulmonary artery or multiple pulmonary arteries coming off the aorta, a condition called MAPCAs (Multiple Aorto-Pulmonary Collateral Arteries).  One PA is much easier to fix and a much better prognosis.  From what they can see, this is what they think is the case with baby girl, but they can't completely rule out MAPCAs.  

They also went over what would happen once she arrived and cleared up a few questions we had.  Once she is born, we will get to spend some time with her to hold her and bond with her, maybe up to an hour if NICU isn't too anxious to rush off with her.  Then NICU will take her and stabilize her.  Chris will be able to go with her to NICU.  Once she is stable and ready, she will be transported over to the CICU (Cardiac Intensive Care Unit) at Children's (within a couple hours).  If she arrives in the middle of the night, and is doing well, they will wait until daytime to do an echocardiogram on her.  If she is struggling, they will do one immediately.  If she is doing really well, and they feel they can wait on the surgery, they will send her home.  She will not need monitors, our doctors don't like to send a baby home if they need monitors because they often give off false alarms.  They also said that she won't need the monitors, that we'll be able tell if she is struggling and that it won't happen instantaneously and we'll have time to get her over to Children's.  If she is doing well enough to go home, we won't have to live in a bubble, we'll be able to take her places and people will be able to see her.  If this is the case, she will go back when she is 3 or 4 months for surgery.  This is obviously the better option because she'll be bigger and stronger when she goes in and will also have learned a lot.  If she has to have surgery right away, she will be in the hospital longer because there will be more developmental delays, such as knowing how to feed.  If she has surgery later, she will already know how to do these things, and won't have to be in the hospital as long.    We are hoping and praying that is she is strong when she comes into this world and that we will get to come home with her.  If she is anything like what she is like in utero, she will come out fighting.  She has been a fighter since the very beginning, this child who statistically shouldn't even be here, so we'd like to think that this this little girl is a strong little warrior.  

My next appointment at Beth Israel was this past Monday.  It went much better than the first one, but I still really miss Mt Auburn!  This time I got to see my doctor, so that was good.  He is the doctor that first suspected the heart defect, and I hadn't seen him since that day in early July, though I have had to him on the phone.  Anyway, he gave me a warm welcome and spent a bit more time with me than they did last appointment.  I also didn't have to wait all that long - only 10 minutes.  He decided we didn't need an ultrasound this week, but that I will have one at my next appointment.  He measured my belly (it was 31cm) and checked the heartbeat (144bpm) and declared everything to be "boring" which is what we want.  I gained 4lbs since my last appointment, which didn't make me all that happy, but oh well.  The real bombshell came when he told me that he didn't want me to go past 39 weeks.  If I don't go into labor by 39 weeks, they will induce me.  At this stage of my pregnancy, learning we have one less week is a little scary.  I keep thinking of all the things I need to do, both at home and at work.  It also means I have to leave work a week earlier than I originally thought.  So really, instead of having 8 weeks left, we really only have 7 weeks left.  The silver lining is that maybe we actually will have that Halloween baby I have always wanted.  I will be 39 weeks 1 day on Halloween.

After I saw Dr Ralston, they sent me up to NICU for a consult.  I met with a NICU Dr and two fellows.  This was meant to prepare me for what would happen on delivery day.  Basically they told me there would be a lot of them in the room.  After she comes out, I will get to hold her for a little bit (Maybe not as long as the cardiologists told me) and then she will be whisked away to NICU where she will be prepared to go to Childrens.  Much of the information they shared was not news and was just a reiteration of what the Cardiologists had told us.  After the NICU Dr debriefed me, she walked me through the NICU and gave me a quick tour.  This was emotionally very hard for me - it made it all more real seeing all those teeny tiny babies in glass cases.  In a few weeks we will take a tour of the Cardiac Intensive Care Unit at Children's.  I expect this to be even harder.  

As I have from the beginning, I continue to go back and forth between wanting the next 7 weeks to fly by and wanting them to never end.  As her arrival comes closer and closer, I have started leaning more towards the not wanting it to end.  I have really enjoyed pregnancy, even with it's struggles.  It is such a magical time and I feel so blessed to have experienced it.  It is even more special knowing I almost didn't get to experience it.  I often think of all the women who struggled like I did, but have not gotten to this place.  I have made it a point to enjoy pregnancy for them, as much as for me.   The other reason I don't want it to end is that I know that baby girl is safe inside of me, where I can breathe for her and her little heart works without any trouble.  Everything post pregnancy is so uncertain, and while we have gathered the best team possible and it sounds like everything will turn out just fine, it is still really scary.  Funny thing is, I am calm about the whole labor and delivery piece and not really all that scared about motherhood, it is the in-between that scares me.  The time at Children's, the surgeries, and all the uncertainty that brings.  

On a lighter note, my NJ baby shower was two and a half weeks ago. It was wonderful and I'll try to talk more about that later this weekend and share some pictures too.  I am so grateful to all those who attended or sent gifts.  It was so wonderful to see everyone. However, it is getting late and I need to go to bed since it is a school night. I turn 32 weeks tomorrow, and will update more this weekend.  I will leave you with my 30 week bump shot and I apologize that this is the only photo this week, but like I said, it is getting late.   




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