Saturday, December 26, 2009

The Power of Prayer

My mother started praying for our baby as soon as she found out we were pregnant. She has been lighting a candel every week at church and praying for the her health.

Once we found out about the heart problems, I was really wishing my Grandma was still around. For some reason, I've always thought she had an "in" with God or something, because it always seemed her prayers were answered. I really wanted her here praying for our baby, but I suppose now she really has an "in" with God, being up there with him and all.

After we found out, mom brought over a bottle of holy water that used to be Grandma's. She told me to annoint my tummy everyday and pray for our baby. At first Adam was heistant to do this with him, but after a couple days it became part of our nightly routine.

At the first ultrasound the two chambers of her heart were very clearly seen, and that was all. But at the second one, we could clearly see three chambers. Granted, the doctor said that this three-chamber syndrome has higher risks for loosing the baby, but I can't help but wonder, if by the next ultrasound the power of our prayer will help our baby girl's fourth chamber grow and develope. If not, then we're still praying for her health and survival.

Wednesday, December 23, 2009

The "Other Part" of the Second Ultrasound

At the first ultrasound, the tech (Patty) and the doctor could only see two chambers on baby's heart. But this time there were clearly three! I'm not sure if the first time they just couldn't get a good enough angle to see the other chamber, or if all our prayers are being answered. I can't help but think that at the next ultrasound with the cardiologist that maybe the fourth chamber will have developed also!

On the not quite as good side though, the cardiologist (Dr. Gremmels) said that this 3-chamber condition, which we believe he called heterotaxy, doesn't have set surgeries like HLHS. They use many of the same procedures as with HLHS, but there might be a fourth surgery, and the survival risk goes down a little. He said that there is no way that the underdeveloped lower chamber will develop (even with the surgeries). So eventually (like when she's 30-40ish), our baby girl will need a heart transplant when that one lower chamber poops out from doing the work of two lower chambers. The risks of transplants are fewer in an adult than an infant, which is why they would wait until she's older. But, I would also think that it would be easier to find an adult-sized heart that would match our daughter, than it would be to find a newborn-sized heart to match her blood type.

I guess, though, that the word heterotaxy means that when the baby's cells were dividing and figuring out who's doing what, that something went wrong and the cells got their lefts and rights mixed up. Which in some organs is okay. For example, our baby's lungs are probably backwards, but both lungs function the same, so it doesn't matter. The same works for the kidneys. But with the heart, the two sides do different things, and our baby's heart is a little shift to the right out of place. Since some organs are only on one side of the body, often with heterotaxy some organs don't develop. In the case of our baby, she doesn't have a spleen, and I'm wondering if she has two gall bladders then (which the doctor said is sometimes the case). She can live without a spleen (people have the removed everyday), but she will have a weakened immune system. The ultrasound tech said that her stomach is also on the wrong side, which we're not sure if it will be a big deal or not.

All of the people that we saw this time were extremely warm and welcoming. They took time to explain things in plain English, and were not at all scary. Granted, I hate driving to downtown St. Paul and parking in United's own parking ramp and having to pay; but it might be worth it to see these people again instead of scary doctor (who apparently my friend, Natalie's, mom knows) again.

It's a Girl!

At our second ultrasound, as we were talking with the ultrasound technician (Patty), she mentioned how before she would know the gender of the baby, she would refer to the baby as a he (which is proper English). But then couples would think that they were having a boy. So she had to stop, and start calling it baby instead. I chuckled and said, "Docherty would be proud." Then the ultrasound tech said, "I had him!" Wait, what? Turns out she went to high school at Saint Bernard's and her daughter went to Holy Childhood and was in Adam's 3rd & 4th grade classes. Small world...

Then, since Adam was at this ultrasound, we asked if we could find out the gender. As you can see from the ultrasound picture, we're having a baby girl!
She was a wiggle worm while they were trying to get a good look at her, we even saw her trying to suck her thumb... though it was hard to tell if she actually got it in there or not.
Someone mentioned to me that it's really easy for them to do 3D ultrasounds, so I asked our new Saint Bernard's friend if she really could easily do a 3D picture of our baby. She said if we had time she would, and at the very end, she did! Adam said it looked like a melted wax image of her, but I think she's adorable!
I'm absolutely in love with our daughter and I can't wait to meet her in May or June (they want to change our due date... again... this time they tell me I'm not as far as the last time, but closer to when I figured we're due).

Thursday, December 17, 2009

Bad Morning

Everyone's first thought it probably morning sickness, but I think I would have rather had that (hmm... well, maybe).

I got up in the morning and went through my normal morning routine... sometimes in the shower, I don't feel well (I think it's a combination of the heat & needing something to eat), and this morning was one of them. But it was worse. I decided not to squeege the shower (shhhh... don't tell Adam, I always yell at him for not doing it!), but to go lay down on the bed. So I grabbed my towel, and started heading for the door. Once I got to the doorway, my vision was going, I was grabbing the wall, looking for the light switch (which I realized was on the other side of the doorway), and my knees were starting to give-way. I knew I was going down, and I remembered in our first class, Carrie told us that if we were going to faint, to lower ourselves to the ground so that we didn't take a hard fall. So, with the help of the wall (and gravity), my arms braced my ways down to the floor.

I never "passed out" where I wasn't aware, but I laid on that floor with my eyes closed for quite some time. I eventually felt I was well enough to crawl into the bathroom, to try to get ready for work. Realizing that it's really hard to get at a lot of what I need to get ready in the morning from a baby's view (good to know what our baby could and couldn't potentially get into!), I crawled back into our room and laid on our bed.

Eventually I felt well enough to finish getting ready for the day, and got up and did just that. I sent Adam a text, telling him that I wished he would take his phone to work, so I could get a hold of him in cases like this. I was hoping he would see it when he got home from work, and realize that he really did need to start bringing it (as I've been telling him for a while).

To my suprise, he took my advice a while ago, and had been bringing it to work. He called to see if everything was alright. He wanted to make sure that I hadn't fallen hard, and I was well enough to drive to school and teach without passing out, especially while driving!

The rest of the day I took it as easy as I could, with the help of my Airliner, I taught from my desk chair, and avoided going down and back up to my 3rd floor classroom as much as possible. And, I have felt fine since.

Sunday, December 6, 2009

Trying to Figure it All Out

Tuesday morning, I woke up and got ready for work with everything weighting on my mind. I had told Adam that we could read that little brown booklet together later. But he was at work, and I was hungry for information that would let me have the same hope my mom had. So I opened the little brown book and started to read. I paged through to try to find the heart defect that mom told me about. It was the last one described. The last line said, "Unfortunately, even with surgery, the long-term outlook is usually poor for babies with this condition, unless a heart transplant can be performed." At which, I broke out into tears that I couldn't control. What I just read had told me that my baby was going to die, unless someone else's baby did so that mine could have a heart transplant.

I paced, I cried, I waited at the window to see Adam's car pulling up, but it never did. 6:45am passed, and I didn't leave for work, 7am passed and I didn't leave. Finally at 7:15am, I gathered up enough will power to get myself into my car and leave for work, without seeing Adam. I somehow managed to make my way through 1st hour, and mass. During 2nd hour, I told Heidi and started to cry, but pulled myself together again and made it through the rest of the day.

During 7th hour, my prep, I got a phone call from my midwife, Carrie. She told me that we were in her thoughts & prayers, but that she was transferring my care to MN Perinatal. She said that her last two pregnancies were high-risk, and that's where her care was transferred. She recommended Dr. Burris, after I told her about scary doctor. I would now be delivering at United, so that baby could be brought right over to Children's to be taken care of.

On Wednesday, during our 1:00 dismissal at school, I sat in my classroom and researched HLHS. I think the best site I came across was from a hospital in Philadelphia called Chop. It had a few videos that explained really well what HSHS was, how the surgery works, and, my favorite, life with HLHS. The last video showed several kids who are living with HLHS, and are doing quite well. I started to tear up a little when one of the doctors said that he had even gotten an invite from one of his patients to his wedding! This gave me the hope I was looking for!
I also found information about this 3-stage surgery. I found survival rates, depending on the hospital and the doctor were anywhere from 75% to 90%. I started to cling to those numbers, as they look much better than what scary doctor and the stupid little brown booklet told me.

On Friday, I got a call back from the genetic counselor, Joan, letting me know that the quad screen results came back and that everything looked good. The risk of the baby having Downs Syndrome was 1 in 3700, Trisomy 18 was 1 in 5000, and spinabifida was 1 in 4400.

Now we are just waiting to meet with the cardiologist at the ultrasound on December 22nd!

Friday, December 4, 2009

The "Other Part" of the First Ultrasound

The other part of the first ultrasound that I wasn't ready to blog about right away was when "scary doctor" (as mom and I refer to her as) came in...

Once the ultrasound tech (Krista) took a bunch of pictures of baby, she said she just needs to get a picture of the four chambers of baby's heart for the doctor. So I watched the monitor with different blobs moving across it (sometimes being able to recognize parts of the heart). But the u/s tech didn't really say much other than trying to get "peanut," as she called baby, to turn.

Once she was done, and gave us a bunch of pictures of baby, she said, "The doctor will be in, in a minute to talk to you." Not having ever been pregnant before, I didn't really think anything of it, and just figured that's how these appointments go.

I got my jacket on, and sat back down to wait. We didn't wait very long for the doctor to come in.

Once she (Dr. Danilenko) was there, I really don't remember a whole lot of what she said. But what I do remember is that she said she was very concerned about our baby's heart. It only had two chambers and she wanted to rescan to make sure they were reading it correctly. Then she went on to tell us about all these other tests I would have to have (most of which I really didn't hear). I remember she said I needed to have a Level II Ultrasound with a cardiologist there to look at the heart, and that they wanted to echo my heart, because they are concerned about my heart murmur (which I've had since birth). She also wanted to do an amniocentesis right then & there, along with a quad screen. She never actually told us any name for this two-chamber syndrome, but she did tell us in such a matter-of-fact tone, that it has a high mortality rate. Which of course, is when my heart just about stopped beating itself.

I laid back down on the bed, and she did the ultrasound again. She still could only find two chambers on baby's heart. I agreed to do the quad screen (blood draw), but I didn't want to do the amnio at that point (and I'm not sure if I'll want to do one later either).

Before we left, the genetic counselor came back in and gave me a little brown booklet with the title "Your Baby Has a Congenital Heart Defect" and gave us a little console.

After the appointment, I called Adam from the parking lot and briefly explained what scary doctor had told us. Then, mom took me out to eat at Panera, so I could re-collect myself as best I could, and then I went back to school (though my day was already over). Adam told me he would meet me at school (he had to be there for set-building & he really wanted to see the pictures).

When I got back to school, Diane asked me if I was okay (apparently I hadn't hidden my tears from the car well enough). I told her yes, and showed her and Barb the ultrasound pictures. I found Jennifer, our principal, and told her what happened, so that they would be aware that I may be needing time off for more appointments. Then I went up to my room and did what I could to try to keep my mind off it.

Adam showed up, and we held each other for a few moments. I showed him the pictures of our baby and pointed out the 5 little fingers and the little foot we saw. He didn't want to worry about the rest until we had then next ultrasound. We talked a little about it, but I don't think he wanted to think or talk about it at that point.

He had to stick around for the set build, but I left, and stopped by mom's on the way home, as she told me she had something for me. I stopped by and after the appointment she had gone shopping and Vickie's was giving away little dogs with each purchase. The dog they had given her said "HOPE" in big white letters. She gave it to me and said she wasn't worried anymore.

She also showed me some research she had done on the internet, but I didn't really hear a lot of it. I remember she said that she found that it was called Hypoplastic Left Heart Syndrome (or HLHS). She told me there were surgery options or a transplant was an option.

This is all I really remember about that day... other than Adam holding me all night long as I tried not to cry myself to sleep.