Big Heart

Mom came with me again to the appointment with the cardiologist at United. We had Patty (the lady from Saint Bernard's) again, but baby wasn't in a good position to get 3D's, and I don't think they had a lot of time. Dr. Gremmels came in right away to take a look at her heart, Patty was manning the ultrasound machine, and two other nurses were in there observing. I know it's a good thing that new people are getting trained in (one of them was new, but not the other), but I didn't like that many people in there. With four of them plus mom and I, it was kinda crowded and I started getting really hot.

Dr. Gremmels went over a lot of what he had already told us, but I think he was showing the other two people in the room. He said everything is still pretty much looking the same, except that her heart is a little enlarged now. But he said that that's normal when you have a low heart rate. The heart is trying to compensate for not getting the blood out fast enough to the body. Mom asked a lot of questions before Dr. Gremmels left about the surgeries, and how many they do each year. If she's not doing well right after she's born, they could end up doing two heart surgeries on her by the time she's a week old (the first for a pacemaker, and the second for the shunt to re-route blood so more can go to her lungs). Otherwise she will have one surgery when she is about a week old (they would combine the two surgeries into one), then when she's 6 months old, and again when she's about 3-4 years old.

If you tip your head to the right, you can see her face.

Her little leg & foot that she likes to
kick mommy with all the time!

Her little hand (she also likes to punch mommy)!

No New News is Good News!

Four days after our ultrasound with the cardiologist, we had another ultrasound. Adam and I met in Woodbury for both the ultrasound to check her amniotic fluid levels, her heart rate, and to check my glucose. Before we started the ultrasound, I asked the technician - Karen - if I could drink the stuff for the glucose test before the ultrasound, so that we wouldn't have to wait as long after. The unflavored sugar water wasn't as bad as I thought it would be. Everyone I had talked to said that it was nasty, but the nurse said it tasted kind of like flat Sprite, and she was right. It definitely wasn't good, but it wasn't horrible either.

Her pretty little face!
Her umbilical cord was in front of her face,
but she cropped it out as best she could.

Folding her little legs just like a lady!

I really need to get better at remembering some of the people's names that work with us, but we had the same ultrasound technician that we had at the last appointment with Danilenko ("scary doctor"). I think I said at that point that she wasn't good at getting pictures, but this time she was a lot better with regular ultrasound pictures, and she even had time to do some 3D's! I'm sure a lot of it has to do with if baby cooperates or not. And today, she did alright, though she definitely likes to cuddle into my uterus (must take after her mommy with liking to cuddle!) I think she might have actually been sleeping for once at this ultrasound, because she didn't move around all over the place. After the tech got one 3D picture of her face, she turned and cuddled her entire face into my uterus though, so we only got one picture of her face. But we got 3D pictures of her legs and her spine too. The tech said she wasn't very good at 3D's, but I told her that she can practice on us anytime she likes!

After she got all her measurements, and took some 3D pictures, she went out to let Dr. Ledella know that we were ready to be seen by her. She came in and said that nothing really has changed since the last ultrasound (4 days ago...). She still has two different heart rates, no extra fluid in her body, and the right amount of amniotic fluid.

Then she sent us to another room to wait the last 20 minutes to my blood draw for the glucose test. I asked them to call with the results either way tomorrow, as I have been kind of nervous for this test. Diabetes runs in my family, and they say that that increases your chances of having gestational diabetes. If I don't pass this glucose test, then I have to take the three-hour glucose test (where you drink the sugar-water and they draw your blood once an hour for three hours), which I really don't want to have to do, as I hate needles. If I don't pass that test, my glucose will have to be monitored, and they will put me on a special "diet" (I put it in quotes, because it's not a diet to loose weight, it's a diet to keep your blood sugar levels low.) I would be concerned about going on the "diet" because my friend told me that she stopped gaining weight once they had put her on this "diet," and with them already being concerned about me not gaining enough weight, I don't want to have that on top of it.

The Second Cardio Appointment

Mom picked me up by school and we went all the way into Minneapolis to Abbott Northwestern for the fetal echo and growth appointment. We had two techs this time, because one of them had just started and was on her second day working with them. I can't remember the new one's name, but the one she was following's name was Paula, and she was from the East coast (which was totally obvious when she said aorta and atria!). They were both very nice, and Paula got a few good pictures of baby.

Baby's profile
You can see her little heart in her chest!

The cardiologist came in and looked at several of the pictures that Paula had taken, and then looked at it "live" with her. We found out that she actually has two different heart rates. I can't remember which was one higher or lower, but the ventricle (on the bottom) and the two atria (on the top) had different heart rates (one was 28 bmp and the other was 128 bmp, if I remember correctly, and I think the bottom ventricle was higher). The cardiologist seemed somewhat concerned, but he said if she can make it to 30 weeks without any more complications, that they would be able to deliver her, if a complication did arise, and still do the surgeries (the shunt to get more blood to her body instead of her lungs, and the pacemaker to fix the irregular heartbeat/rate). However, if more complications arose before that 30 week mark, they wouldn't be able to do anything, but let her, hopefully keep developing inside me. He said that delivering her and doing the surgeries before that 30-week marker, gave her pretty much zero-chance of survival. But after that 30-week mark, her odds were much better. So right now we're praying for no more complications (hopefully for the rest of the pregnancy... and her life... but for sure until that 30-week mark).

After a couple minutes, Dr. Gaziano, as mom described him, a grandfatherly fellow, came in to look at her growth. He said she was just slightly above the 10th percentile, for 24 weeks- 5 days, and called her petite. Mom and I commented, "Well, look at her mother!" And mom explained that pretty much my entire life, I have been in the lower percentiles for height & weight. I also mentioned that according to my charts, I calculated my due date to be June 1, not May 22, and asked if that might have something to do with it. He didn't quite seem to have an answer, but just acknowledged what we said. Then he started telling us that we needed to get my care switched over to their system. I told him that I had already, but I try to schedule my appointments in Woodbury, or United if I have to, and try to avoid venturing into Minneapolis. He was a very nice doctor, but I don't think I would like to see him again for this pregnancy. With all of the complications, I would like to stick with someone a little more sharp. But for any "normal" pregnancy, I think he would be a fine doctor to have.

Once he left, I laid on the ultrasound bed with jelly still on my tummy, and towels covering my tummy, waiting. We thought we were finished, but no one had said anything. They just kind of left us hanging. After about a half-hour or so, mom went out into the hall to find Paula, the ultrasound tech again, to ask if we could leave or if someone else was coming in to see us. She didn't realize that Dr. Gaziano had come and gone, but once we explained that to her, she said we could go. This is the second time that we have been "forgotten about" with Minnesota Perinatal. (The first time the actually forgot we were supposed to see someone else and tried to send us on our way). I know miscommunication happen once in a while, but twice is too much for me!

We Found a Keeper!

Mom went with me to my last appointment on Wednesday. It was a quick ultrasound (which means not much time to look at baby & no 3D's) and an OB appointment. The ultrasound tech (who was the same one who did our very first ultrasound - Krista) was looking at the fluid around her heart that they found last time, and making sure that there wasn't any more fluid building up in other parts of her body (head, lungs/ chest, etc.). They also want to monitor her heart rate closely. Baby checked out pretty well at this appointment. There was the same amount of fluid around her heart, so she didn't gain any more, and there wasn't any fluids in other parts of her body. If there were, then they would be concerned about hydrops. (I wouldn't suggest looking at Google images for hydrops.) Her heart rate was also higher this time (80-90 bpm) than last time (60 bpm), but still not where they would like her to be (120-180 bpm).

Then came in Dr. Ledella! She looked around at the baby also, and found that her umbilical cord has two "cords" inside. Typically, babies are supposed to have one vein and two arteries, but she only has two (one of each). She was very relaxed in the manner in which she told us. She said that typically they would be concerned about a genetic defect or heart defect, but they already know that baby has a heart defect, so they aren't really concerned. Then she chatted with us, and we mentioned how there are lots of people praying for our little one. She said she really believes in the power of prayer, medical technology can do a lot, but miracles happen all the time. She was very personable, and we both liked her a lot. We found a keeper!

They want to see me again in two weeks (next week I see Dr. Gremmels, the cardiologist), and I set up another appointment with Dr. Ledella at a time that Adam will be able to make. I hope he likes her just as much as mom and I did!

No crying after this appointment, in fact, I am much happier! (Which is good for baby!) :)

Another Appointment with "Scary Doctor"

Adam and I had another appointment today, and even though I requested not to be seen by Dr. Danilenko, we still saw her today. The ultrasound technician (Karen) wasn't nearly as skilled at getting good pictures (baby also wasn't cooperating very well... she seemed to have her face cuddled into the placenta and was moving her arms & legs all over the place). But the tech was very good in explaining what she was looking at and measuring. It's amazing that she can look at her grey abdomen and say here are her kidneys and this little spot here is urine. We got one good profile picture of her, but this tech wasn't as comfortable doing 3D u/s, so we didn't get any of those. But we did see her open her mouth and stick out her tongue twice.

Opening mouth to stick out her tongue

(we could actually see the tongue,

but didn't get a good picture of it!)

Another profile (she's getting so big!
No wonder I feel her kicking all the time!)

After she was finished, Dr. Danilenko came in and took another look at her heart. Her heart rate was 60 bpm (where usually it's at 120-180 bpm) and there was some swelling around her heart. She was concerned and started talking about giving me steroids to develop her lungs in case they needed to deliver her early, and went on about a couple other things. She said she would put a call into Dr. Gremmels (the cardiologist that we saw last time) to ask him. But said that she wanted to do another u/s next week, and another OB appointment the following week. Then sent us on our way.

I asked the lady, Wendy, at the front desk though, because I was pretty sure we were supposed to have an OB appointment today. I was right, so we sat in the waiting room for about another half hour waiting for that. The good news is that I gained weight (last time I hadn't), but the bad news is not enough (not even half of what I should have). The nurse (whose name I can't remember, but she was very nice and wore braces - Kris -) seemed to think we could put off seeing a dietitian for now though, since I've had a history of having problems gaining weight, and since the baby seems to be growing alright.

Then Dr. Danilenko came in and she she talked to Dr. Gremmels, who said that delivering early would be bad, because trying to do heart surgery on a preemie is very difficult. He also said that a low heart rate was common, so he wasn't worried about that, but did want to see me in two weeks (instead of three, which is when my next appointment with him was scheduled). She also mentioned (which Dr. Gremmels had already mentioned at our last appointment), that she will probably also need a pacemaker.

We finished the OB appointment by talking about pre-term labor and talking about my due date. The nurse said that Dr. Danilenko is still going by May 22nd. I am still counting as June 1st though. She also asked me a few other questions. Adam was sitting where he could see her computer screen, and saw that she clicked the "could not ask: spouse/ family was present" box for the question, "Do you get abused?" Good thing they weren't looking at my legs where I have two huge bruises from dropping a piece of 3/4 inch plywood (when we were working on the closet), with another permanent bruise from playing paintball in college with Charlie & Tommy!

I seem to have my ups and downs with this pregnancy, but it seems after appointments with Dr. Danilenko I always cry at least once, and I did pretty much as soon as we got in the car. I asked Adam through my tears that if Dr. Gremmels says that a low heart rate is normal with this kind of thing, then we shouldn't be worried. He agreed, which made me feel a little bit better, but I'm still afraid for our little girl. Please keep praying for her! We need her as strong as she can be so that she can make it through all of these surgeries.

All Over the Place!

I have been feeling our little girl moving quite a bit. I have put my hand on my tummy and even felt the movement of her kicking (or elbowing or headbutting or...) me. Both Adam and my brother have been telling her "Kick her in the bladder!" (I'm not sure if they want me to pee my pants or if they think they're being funny...) I have had Adam put his hand on my tummy when I'm feeling her move around, but he never felt her move. Last night (and pretty much all of today) she was all over the place, bouncing off the walls. When she was squirming around last night I had Adam put his hand on my tummy, and almost immediately he felt her kick, and then kick again. I was so glad he could finally feel her move too!

Adam's cousin, Bobby, and his wife Christina, just had a beautiful baby girl, and when we went to visit them this week, they gave us a fetal heart monitor that they had used. Though they said that they never actually heard her heart, but they heard her when she was moving around and when she had the hiccups. So we tried it out last night, since she was moving all over the place, but no luck. Hopefully the farther along we get, the more we'll be able to hear. I would be really excited to hear her heartbeat, since they seem to think she has an irregular heartbeat. But at the last ultrasound she was moving around all over the place and playing with her umbilical (after all it is her only toy in there!), so they couldn't seem to get more than a beat and a half.

Last week, I also got a phone call from Joan, the genetic counselor, and she told me about a website about heterotaxy. Apparently, the odds of a baby having it are 4 in 1 million (even more uncommon that the HLHS that we originally thought it was).

4 New, Old Posts

I had written four different posts that I hadn't posted, because Adam and I hadn't shared the news with everyone yet.

At Thanksgiving, we told everyone we were pregnant, and at Christmas, we told everyone what is going on with our baby. Read these posts to find out more... then please keep our baby in your prayers!

The "Other" Part of the First Ultrasound 12-4-09
Trying to Figure it All Out 12-6-09
The "Other Part" of the Second Ultrasound 12-23-09
The Power of Prayer 12-26-09