From the beginning....this is long so be ready!

I have two very healthy children...a boy and a girl. I guess I have taken that for granted and now realize that anything can happen to anyone regardless of what one might think. I am a nurse. I have studied it all. I know what CAN happen but also know that the chances of things happening out of the norm are not that great. Odds of winning the lottery are better than having a baby be born with birth defects. I, for one, have never won anything. Well, when I was younger I won a radio contest that got me tickets to a 76ers game. Other than that I have never been what anyone would consider lucky.

When I found out that I was pregnant...almost one month to the day after my wedding, everyone asked what we wanted, a boy or girl. I could honestly say that all I wanted was for the baby to be healthy. I already had a boy and a girl, the best of both worlds. As the pregnancy progressed we thought everything was right on point, I was throwing up like a bulimic, I felt like crap, I was tired even when I was sleeping- all signs of a healthy pregnancy :). All of that changed the day after our "big ultrasound" at 22 weeks on February 18th.

I received a phone call from the OB coordinator at my OB's office and was told that they were only seeing 2 vessels in the baby's umbilical cord, one artery and one vein. There should be 3 vessels (2 arteries and 1 vein). She says this happens sometimes and that as a routine follow up I would need to go to Hershey Medical Center for a fetal echo (ultrasound of the baby's heart) and a level 2 ultrasound (a normal ultrasound that gets better pictures). She said 9 out of 10 times everything is fine and the baby will go on like normal. All we thought that would happen is that we would have a lot of ultrasounds and get to see the baby more. We were nervous but confident that everything would be OK.

Hershey's heart group got us in on February 24th, the day before my 28th birthday. We had made plans to go out to eat right after to celebrate my birthday (what better way for a pregnant woman to celebrate than with food).

As the echo started the doctor (who performed the test himself) was becoming obviously frustrated by the activity of our little one. She was in a bad spot to begin with and then whenever he could get a good view of the heart the kid would move. I guess she was playing, but he was really not amused. So he said that he saw some defects but that he had to stop because of all the movement. He said we could wait until after he saw his next patient or we could come back later. Of course we waited, with the heaviest heart that either of us had ever felt. About 20 minutes went by and he decided to try again. This time I held my breath and prayed for the baby to remain still. It worked because he was able to get good pictures (not as good as he liked but good enough). His diagnosis that day was a small left side of the heart and a narrowing of the aorta as it leaves the heart. Not horrible diagnoses but still one that would mostly likely require surgery after birth. We were told that in order to be absolutely sure we would need to come back when the baby is bigger and less active so he can get even better pictures.

Devastated we left. We decided to continue with our plans as cancelling them wouldn't change anything. We went to Red Lobster, it is probably our favorite place and we usually only go about once a year because it is expensive. As I was eating it felt more like someone was forcing me to eat nails instead of the meal that I had been looking forward to for weeks.

The next day, my birthday, I received the phone call that changed everything. The doctor had a chance to review the tape of the echo and saw a more critical diagnosis than what he originally gave us. He felt as though what he was seeing was the baby's aorta leaving the wrong side of the heart. He couldn't be certain but he said that he felt pretty confident. As soon as the phone call ended I called my dad and asked him to please contact my cousin's husband to find out if we could get in touch with the Children's Hospital of Philadelphia (CHOP). I had no confidence in this doctor because he threw diagnoses at me left and right and then seemed to become irritated when I would ask him questions. He talked at a mile a minute and always seemed to be in a rush, not someone I wanted to be in charge of the well being of my unborn child.

As arranging an appointment with CHOP was in the works, we had our level 2 ultrasound on Tuesday March 3rd, again with Hershey but with a different set of doctors, and we also met with a genetic counselor there. Going into the ultrasound we thought that maybe the only thing we would be told is that the baby was actually a boy, not a girl as we were originally told in the first ultrasound. Again the baby was active, flipping and flopping, frustrating the tech---who made it obvious with each loud huff she gave. She confirmed that yes we were indeed having another girl then she said a doctor would be back to go over everything with us.

The doctor came in and explained what he thought he saw. He said that it looked as though the esophagus was a blind pouch, indicating either a condition known as esophageal atresia or another called tracheo/esophageal fistula. Also the baby's stomach was enlarged and there was a bright spot in her bowel. More bad news, even worse outlook.

The genetic counselor told us that this could indicate cystic fibrosis, Down's Syndrome, or just bad luck. We declined an amniocentesis as we felt the risks were too extreme for this baby who was already going to have a rough road ahead, also the outcome would not change what would happen after birth as none of those conditions are surgically correctable. Again we head home with heavy hearts, trying to digest the news we were given.

I received a phone call that afternoon that the doctor at CHOP would definitely see us and would like to do so sooner rather than later. We set up an appointment for that Friday, the 6th, to have another fetal echo and meet with the doctor.

I worked that night (11pm-7am) and was not very productive. I felt like a zombie and just did what I had to to get through the night. The next day, Wednesday, I had an appointment with my regular OB. I went into that appointment tired and heartbroken. I showed him the ultrasound report (they had given me a copy but had not yet faxed one to him). That is when we discussed my cervical length. He told me anything under 2.5cm in worrisome for going into preterm labor...mine was 2.0cm. He immediately sent me for another ultrasound in their office and I measured 1.33cm. What wonderful news.....not only does my baby have to fight outstanding odds which would be hard at full term but now there is a risk that she could be born preterm. At this point I was 24 weeks and 4 days. So off to the hospital I went to be monitored and medicated. I only had to spend one night there....one looooong night, and was sent home the next day on bed rest and no work. Great.

Friday we had our faith in health care restored when we went to CHOP. The lady who performed the echo was an angel. Joked about the active baby but never got frustrated and she took her time so she could get every little detail of the babies heart and major vessels. Then we met with the best doctor I have ever dealt with.....and I'm a nurse, I've dealt with a lot.

The diagnosis from them was so much more promising. The aorta was where it should be but yes, it is narrow. On a 0-10 scale of chances that she will need surgery after birth, she is a 9. He also discovered that she has a very mild form of Heterotaxy Syndrome. Her large vein that returns blood without oxygen to the heart goes on a detour to the other side of her body and attaches to the wrong side of heart. The blood does get where it needs to go and isn't a life threatening condition.

That appointment was the first one in weeks that Mike and I did not leave crying and wondering if we would ever bring this baby home. The surgical repair of the aorta has a 97-98% survival rate. Things are looking up.

As far as the other defects, we go back to CHOP this coming Monday (the 16th) to have more tests on those issues. We have our hopes up that we will receive better news.

Like with anything, any good thoughts or prayers are very much welcomed and needed!

This blog is intended to keep everyone updated who wants to be and also will allow me to get out what I need to. If anyone has any questions on the information I provide please feel free to ask! Apparently I am going to be off of work for the long haul and this will be something to keep me occupied!