A sense of perspective

Baby boy has what is called "coarctation of the aorta". Basically, his aorta is narrowed in one section. We are being told right now that if it doesn't fix itself (meaning, if the measurements stay the same or worse) he will need surgery. I will go every 4-6 weeks to have measurements taken via ultrasound to determine if the surgery will need to be done at birth, or later. If there is a 30% chance or greater that it will need to be done at birth, we will need to deliver in Boston at Brigham & Women's hospital so that the baby can be as close as possible to Children's Hospital. We will have an amniocentesis done at about 35 weeks to find out if this is related to a genetic disorder (such as Down Syndrome) and will meet with a pediatric geneticist in order to educate ourselves about all the possible genetic syndromes it could be, since the doctors are also operating under the observation that the baby's nuchal fold (skin at the nape of the neck) is thicker than normal.

A lot to read? Ya, try being us the past 6 weeks. Here is a run-down of our life since April 4th:

-my brother was admitted to the ICU with a double lung infection and nearly died

-I was diagnosed with Placenta Previa.

-E was diagnosed with Hip Dysplasia, and uses a brace every day for sleeping

-We were sent to a pediatric neurosurgeon to asses the circumference of E's head and see if there were any issues (there aren't, thank God)

-At our follow-up appointment with the OB in the beginning of May, we found the Previa had cleared, but the baby's nuchal fold was measuring "thicker than normal".

-We were sent to Boston for an extensive ultrasound of the baby. There, we found there is an issue with not only his skin fold measuring large, but also his heart

-I went to the stomach doctor with right upper quadrant pain and am scheduled for an ultrasound next week

-Today we had an ultrasound of the baby's heart, where we found he has Coarctation of the Aorta

-E will be having an ultrasound of her heart to rule out any issues (we requested this, and the doctors agree)

To say our lives have been hectic the past month is an understatement. Some days I wake up thinking I must be living someone else's life. But, then I remind myself that it is important to always keep a sense of perspective. I always remind myself that things could always be worse. E's hip dysplasia could have been more serious, and the neurosurgeon appointment could have not gone as well. And, even though my husband and I are so scared, this heart condition that baby boy has really could be worse. And, perhaps the most important thing, is that hubby and I are not going through this alone. We have each other, but we also have our families and friends, all of whom have been pillars of support. And let's not forget the doctors. The Pediatrician called me tonight and spent close to a half hour talking to me about baby boy and what she will do in order to ensure the best care for him. She also told us we are doing a great job at being the best parents we can be. Doctors like that truly are priceless.

I think keeping a sense of perspective in times like this helps me to not completely lose it. If I keep remembering it could be so much worse, and remain thankful that it isn't, then I avoid the pity party that I sometimes want to give myself. It also helps me stay strong, for myself and for those around me. I am learning how to be an advocate for my children, a lesson that has proven to be invaluable. I have finally come to the point where I don't care how many times I have to ask or how much I have to push to get something done. As the pediatrician told me tonight, there is no such thing as overreacting when it comes to your children. I'd like to think she is right.

Day 30- Bitter sweet

Well, I did it, I am officially a couch-contained momma no longer. So, why is this bitter sweet? Because if it's not one thing, it's another.

I am ecstatic that the doctor was using words like "great" and "beautiful" to describe how things pertaining to the Previa looked today. It feels good to know that the sacrifices I have made this past month have really paid off. I am proud of myself and extremely thankful to those around me who have helped.

What I am not thrilled about is what happened after our ultrasound today. As soon as the doctor walked in the room, I knew. I could sense that something was a little off during the ultrasound, but I thought that perhaps I was just being a normal overly sensitive pregnant woman. So, I convinced myself it was just my wild hormones, until the doctor walked in and informed us that there was something in the ultrasound shots that worried her. She said it looks as though the skin at the nape of the baby's neck (the nuchal translucency) is thicker than normal. In a million years, I could never have imagined this. Apparently, this could mean nothing at all, or it could mean some type of tumor or even Down Syndrome. The problem is that she really can't give us a definitive answer, and I am not really sure we will get one. Nevertheless, she is sending us into Boston to have a more extensive ultrasound with a specialist. I am hoping it turns out to be nothing, but I keep wondering when our luck will run out. We were lucky that things have cleared up, we were lucky that we got pregnant again so soon, we are blessed to be having one of each. When does that luck run out, and the other shoe drop?

And, why is it that as soon as something like Down Syndrome or a tumor was mentioned, I immediately felt like my pregnancy is sub par to someone who has a baby with no abnormalities? Now, obviously we don't know that there is really anything wrong at all, but if you were me, would you not wonder and worry? I think I feel this way because I have a taste, after being temporarily "disabled" so to speak, of how the outside world treats people who are different. To be honest, I am scared. And I think the worst part of it all is waiting....waiting to get in to the specialist, waiting for answers that would hopefully put us at ease. My husband says that if we find out that there is a good possibility something is abnormal, that he doesn't want to have further testing, such as an amniocentesis, because it really wouldn't matter since we are having the baby no matter what. I do see his point, but part of me would really want to find out more if possible (despite the risks) so that at least we were mentally and emotionally prepared for what lies ahead.

Now, this could all be for naught. It could turn out that this is all just the doctor being overly cautious. And I pray that this is the case. I never in my wildest dreams would have imagined my pregnancy to be this unpredictable, and I realize this is quite an oxymoron. Perhaps I was spoiled with my first pregnancy, which was picture perfect. Sometimes I wonder if this is me "paying the piper" for the fact that I have been blessed with a beautiful daughter and am being blessed again with a son. There are so many thoughts going through my head right now that it is difficult to sort through. We are still trying to digest everything that has happened before today, and now it's as if we've eaten too much at the buffet. Way too much to break down and digest and sort through.

If there has been one good thing that has come out of all of this, it is the reaffirmation that my marriage is one that can withstand anything. I believe that over the past 30 days, my husband and I have learned how strong we are both as individuals and as a couple. If you never had to live the meaning of the "for worse" part of your marriage vows, then you are lucky, and I would never wish that upon you. But, those of you who have, know how it is much different to say it than to live it. Everyone's "for worse" is different, at different degrees, and it's all relative. In the short time that we have been married, I can say that this past month has been the first "for worse" we've endured. And I hope we never have to deal with anything worse. Actually, I think we are due for a "for better" one of these days.

Day 26- Taking it in stride

I always thought I would be a mom who always had her "stuff" together. You know, someone who never looks frazzled or stressed and who looks like she is handling it all in stride. Boy was I wrong. Most days, I just feel like a hot mess. And add to that if I actually attempt to go out with E (not in the past month, but before) and she has a meltdown, well, you can just about see a cloud of stress around me. I know some moms who seem to be totally anxiety-free and seem to handle every situation with grace. How do they do it? I sincerely cannot fathom this. And, I also can't understand what it is about motherhood that is so stressful. Is it wrong to say everything? Don't get me wrong, it's the best job in the world. But, I think there are so many judgements on what a "good" mother is, and a lot of us enter into it holding ourselves to other people's standards.

I had a conversation with a good friend of mine last night who had two kids herself. She says she doesn't pay attention to what the books say or what other people say and just does what she feels her kids need in the moment. This is such good advice! I think that should be at the forefront of all those books that tell you how to be good parents. I believe that a lot of these books strip away our natural instincts as moms (and dads) and make us feel we have no clue how to do this. And yes, there are many days I believe that I should probably have been required to pass a test before becoming a parent. My friend also said kids know way more about themselves than we, or any of those books do. Sometimes, being a parent is about letting your child lead you. For example, E is a really picky eater and has not been into eating solids (unlike some of her friends who are up to three meals a day). I was getting very overwhelmed about this, and then I took a step back. Within a week, she started taking less formula in the morning, and wanting more solids. So, I went with it. Now, even though she still likes her bottle, she is doing better eating solids. And, it came completely from her, not forced by me.

Sometimes I wonder if any other mom or dad feels like a hot mess, completely overwhelmed in parenthood. I do get caught up in the stress of things, but amazingly, E's precious smile can bring me to the place where it really matters. It's like she knows when I am completely overwhelmed about something, she will look at me and smile or laugh. Maybe she does know more than I think.