Thursday, April 29, 2010

Scheduled Baby's Birthday

I met mom at work early in the day to drive to our appointment with Dr. Gremmels. We didn't have to wait too long until Jeanine called us back to start the ultrasound. She first did the biophysical profile, and baby scored eight out of eight again, though the amniotic fluid was a little lower, but I don't think she could find a fourth pocket.

Dr. Gremmels came in and said we were doing quite a good job, and he was happy to see me past the 36 week mark. I told him we had decided to schedule a c-section, and would like to do that today. He was happy, and said that whichever cardiologist was on-call when we delivered would pass on everything to him to review and set up a plan for her surgery. I asked him about breast feeding her right away, and he said that usually about ten days after surgery mothers could start breast feeding. He said that sometimes with getting use to the new environment and having to breath on her own is enough work for her heart, and adding feeding in that is sometimes too much.

Jeanine then sent us across the hall to the nurse (who's name I've forgotten, but I think we've had her before). She took my weight and found that I haven't gained anything for the past two weeks. Though she didn't say anything, it somewhat concerns me since baby should be gaining about half a pound a week at this point. Then asked me the usual questions, and asked if we wanted to schedule the c-section. I told her that we were hoping to schedule it for May 17. She said she would check the openings for that day while we talked to Dr. Calvin.

When Dr. Calvin came in, I think he thought he would still have to convince us to schedule a c-section. But I told him right away that the nurse was checking the openings on May 17. He seemed relived and didn't have much to say after that.

Soon the nurse came back and said the only opening for May 17 was at 1:30 in the afternoon. I wasn't too happy with this, as I'm not supposed to have anything to eat or drink (not even water!) for eight hours before hand. But not to worry, she tells me, they'll put an IV in right away when I get there at 11:30am to keep me hydrated. (Oh great, so no food... which is when I get stomach aches and feel like I have to throw up -and not even water helps that feeling anyway-... AND I get to sit around for two hours before with a needle stuck in my arm the whole time... gee that will be such a relief!) Then she went through what will happen, step by step. When she told me that Adam would not be coming into the OR until after I was all numbed up and they were just about to cut me open, I stopped her. I said, "Oh no, Adam will be in there when they are sticking a giant needle into my spine, I don't care that they numbed the area." (I'm thinking there will be lots of small fights we will be putting up while I am going through this procedure.)

When I got home, I told Adam that I didn't want him leaving my side once they put the IV in my arm. Of course, once they pull baby out and bring her into the other room, he will go with her. But other than that, there is no reason for him to not be in the room with me.

Thursday, April 22, 2010

Baby Shower #2 - Co-workers

After school today, my co-workers threw a baby shower for me! We went down to the lanes and had cake with little baby booties on it with little tiny bows tied on them. Then I opened gifts and visited with everyone.

Just about everyone went in on the group gift, but not everyone could make it down to the shower (though we did have our two token males, Ted & Jeff). Heidi said they were going to buy the travel system, but when she went to Target (apparently just after we had been to the same one and changed some items on our registry!) they one we had registered for is no longer being carried. So they got us the Pack N Play instead, along with lots of other little gifts. When we were there updating our registry, Adam saw a fuzzy blanket with a monkey on it and had to register for it. As I was opening the gifts, you can only guess what was in one of the bags! Adam's monkey blanket! One of my favorite gifts, though, was not from the group gifts, but from Sue. She made a little tiny cross bracelet for baby to wear when she's baptized, though I'm going to put it on her ankle while she is in the hospital.

Cross bracelet made by Sue
I got home before Adam, but when he got home and carried up the Pack N Play, I showed him what we all got. The first thing I showed him was the monkey blanket. He snatched it out of my hand and got really excited!

Adam's monkey blanket

Tuesday, April 20, 2010

Walking all Over Abbott

When Adam and I got to Abbott, we parked in our usual ramp and walked around the city blocks until we got to the main building. I was told to meet in the MAC, but neither Adam or I really knew what or even where that was. We asked a couple people for directions and got pointed there. Once we were sitting in there, we read the sign on the door and figured it all out "Maternal Assessment Center." Then we remembered Katy talking about it in our classes.

Nikki came in to meet us and gave us a tour of the birth center. She showed us the labor rooms (which were really small, but at least they were private). Then she showed us where the OR and delivery rooms were. (They have two rooms that are connected to another room in the middle. The room in the middle was where they will be taking baby after she is born to hook her up to everything and to make sure she is doing alright.) Then she showed us where the recovery rooms were and told us that they were "a little smaller than the delivery rooms." That didn't quite make sense to me, because that is when people will be coming to visit you and the baby. So why wouldn't they have the recovery rooms be a little bigger? She asked if we had any questions, and we had a few. Then led us back to the MAC.

When I got there, they pulled me back, through some kind of dirty/ messy rooms to a room that was a little cleaner, but very small and cramped (as were the hallways). We waited for Cindi to come in and do the ultrasound. Their machine was newer and more portable than those that the Perinatal clinic has, but much less fancy. The only had one probe (so no 3D's), and the image wasn't all that great. Baby got four of the points right away (for breathing and fluid), but it took her a while to get the other four points (she was sleepy). But she passed with eight out of eight! We left there and headed for the Perinatal clinic in another building.

Nina, a nurse, called us back and asked all the usual questions. I told her that I'm having some false labor, once in a while. But she didn't seem to concerned. When she finished, the familiar face of Dr. Calvin walked in. He, like Dr. Fairbanks last week, strongly suggested doing a c-section. Though he was a little less bold about it. He also brought up that if baby's heart rate does drop during labor, she could risk brain damage, if she can't get enough oxygen up there.

After talking with Dr. Calvin, Adam and I are discussing more and more about the idea of having a c-section instead. It would be safer for her. Plus, since they schedule them a week before your due date, we'd get to meet our baby girl a lot sooner!

Monday, April 19, 2010

Dreams of Baby!

Last night I had a strange, but kind of exciting dream. I dreamt that I was in bed trying to sleep, but Adam hadn't come to bed yet. I couldn't sleep, because something didn't quite feel right. I wasn't sure if my water had broken or not, but I wasn't having contractions or anything. I finally called for Adam, but by the time he came upstairs, the baby was already born! So I picked her up and held her and we started to pack things up to go to the hospital. (we don't have our bags packed yet, but after having this dream, I want to get them packed ASAP!) But then I realized that we didn't have a car seat for her, so I wasn't quite sure how we were going to get her to the hospital. I was concerned about her heart and getting her checked by the doctor. Then I woke up. I remember she had a beautiful face, but her ribs/ chest was a little larger than normal. I'm not sure why, but later I was thinking maybe that was my brain's way of interpreting that she has a large heart.

Before the dream, I was getting anxious to meet our baby girl, but now I really want to meet her as soon as I can! I know though that it is best for her to stay in there as long as she can so her heart can develop more. So I will wait... as patiently as I can.

Mom's Group

I met with a group of mom's who all have children with disabilities on the other side of the city tonight. They meet for coffee about once a month (of course next month I won't be able to go!). I heard a little from each mom about their child and what they have been struggling with, but also, what they have found to be a blessing.

Jane is the lady that is in charge of the group, and has a yahoo group set up for everyone. I haven't gotten on there yet (I have to email her to get an email invite to the group). But they asked me to post a link to my blog.

I finally met Mary from Prenatal Partners for Life, and she was very sweet. I also finally met Ashlee, who has a son, Levi, who has another rare diagnosis (of course I can't remember the name).

Most of the mom's had kids with some sort of chromosomal abnormality. I guess I didn't really realize that so many of the disabilities out there are related to the chromosomes not getting together correctly. As far as I know heterotaxy isn't related to chromosomal abnormalities, but I could be wrong (I seem to learn something new about it all the time!).

While people were going around talking about their child, most of them had some sort of cognitive disability, so I was feeling lucky that my baby will only have to have heart surgery (as far as we know at this point anyway... she might have stomach issues also). But then one of the last ladies that shared, told us about her son who had a heart defect. While he was having heart surgery, he lost oxygen to his brain and ended up with some brain damage. That hit home, because that could happen to our baby girl. We just need to keep praying for her!

Sunday, April 18, 2010

Baby Shower #1 - My Family & Friends

Nancy and Natalie hosted our first baby shower (we laughed, because about the same time last year we were having a bridal shower) at mom's house. Mom made eggs Benedict, a fruit tray (yummy!), cheesy hash browns, and yogurt parfaits. Nancy made two different desserts, and Natalie brought the games.

All the yummies!
What a beautiful day for a shower! Not only was it my grandma's birthday, but the weather was wonderful. We say out on mom and dad's deck and ate, enjoyed each other's company, and played the "guess that baby food" game. When Natalie read off the answers for what was in each jar, she said that applesauce was in jar #2. But I had put down apples. So I raised my hand, and said, "Teacher, can I get half-credit for apples?" Everyone laughed, and she gave me the half point!

Then we moved inside and played "baby shower bingo," while I opened up all the wonderful gifts people brought for us. Laura made a hooded towel out of a regular towel and a washcloth, Lisa, Sara, Linda, and Becky got a swing for baby (Lisa said it was because mean John had taken down the swing set, so now baby has a swing!), Natalie & her mom put together a "meal-time" gift, both grandmas found cute outfits for her... lots of fun stuff for baby!

Reading off everything from the grooming kit
so the girls could cross it off their
BINGO card.

Grandma Beth (Adam's mom), Karen (my
Godmother), and Laura (her sister) playing
BINGO while I open gifts.
Then Nancy brought out dessert on a serving tray. Delicious! And as people finished their dessert, they started to leave. I put my dessert down to say goodbye to people as they were leaving, and once everyone was gone, I sat back down to finish. I picked up my virgin mimosa, and took a couple sips, but it tasted different. It was mom's not-so-virgin mimosa! Oops!

Grandma Denise (my mom) & Nancy
getting dessert ready to serve
Then I headed home and Adam helped me unpack the trunk packed with goodies for baby. He finished putting together her dressers, and vacuumed the room. Then I went through all her clothes and diapers and things, and started organizing them into different drawers. So exciting! But I think I want to rearrange her furniture, hopefully Adam and his brother John will be nice enough to move it again! :)

Wednesday, April 14, 2010

"Childbirth Preparation Class" No. 3

On my way back to Minneapolis with Adam this time, I was wearing my sunglasses, but Adam could see or tell somehow that I had tears in my eyes.

-My mood has been up and down through out this pregnancy. I was sad that we didn't get to experience a lot of things, that most couples get to experience when they have a baby. I want to be able to hold my baby girl right after she is born and spend time getting to know her and comfort her before she leaves to go to the NICU. But I will only be able to have a quick glance, before they whisk her away and hook her up to several tubes and whatnot. I'm sure that has to be scary for her, just coming into this world and then getting checked out by several doctors and getting tubes put into her tummy. But I won't be able to be there to hold her or talk to her or soothe her.-

And he asked if I wanted to turn around and go home. I didn't though, I wanted to finish out the class and learn all I could learn.

In class, Katy told the birth story process from the view of the baby, then from the view of the mother. She talked about how right after the baby is born, they place the baby on the mother's chest, and the baby, no matter how many other people are around talking, always looks at the mother and father, because she recognizes the voices from in the womb. When she was describing all this, my eyes started to tear up again, but I managed to hold it in.

Then she talked about c-sections, and said that often moms come back after they deliver, and tell Katy that she should have talked about c-sections. And she just nods and smiles, knowing that she talked about it in their class, but most people tune out, because that's not what they want. Since Dr. Fairbanks had just told me that morning that there was no option, but a c-section. So I listened to her tell the birth story from both perspectives again, but for a c-section instead. But even that didn't sound like what my birth story will be, because mom and baby still got to spend time together. Even with a c-section, they will briefly show me our daughter, then Adam will follow her into another room, and then later to the NICU, while they stitch me back up.

Of course, I'm glad we went to the class and learned all that we did, but I only wish that we could have many of these experiences, and that baby wouldn't have to go through everything that she will have to go through.

The "No-Natral-Birth" Doctor

I met mom (and Adam, but he was heading home) at work in the morning to go to Abbott for our growth/ biophysical profile ultrasound, and OB check. We had the same ultrasound technician, Jeanine, who again, did everything as quick as she could, so she could send us on to the next room. Baby again scored eight out of eight on the biophysical profile, but they decided not to do the non-stress test (NST), because she never gets those two points anyway, since they can't really follow her heart rate. When Jeanine measured her for growth, she said she weighted about five pounds! I should have asked how big her head was, since she measured it, but didn't think to until after the fact.

After she finished taking all the measurements and giving baby all the points, she gave us one ultrasound picture that wasn't the greatest (but baby wasn't wanting to face the camera), and sent us across the hall. A nurse came in, whose name I can't remember (Cheryl), and took my weight and went down the list of the usual questions. We talked about the school's closing and how Arlington is closing as well. Then she left and we waited for the doctor.

Soon, Dr. Fairbanks, who Krista (an ultrasound technician at Woodbury) said she liked, came in and said she wanted to have a conversation with us. She said she had heard that we were hoping for a natural birth, versus a c-section. She then told us that baby would not survive a vaginal birth. Quite contrary to what the other doctors we have talked to have said. But, she said that they wouldn't be at my bedside when the time came to deliver. From what I understood, Dr. Calvin (who said he would support us) did sometimes deliver at Abbott (which is why I decided to ask him when he was in for Dr. Ledella one day). And Dr. Payne (who said he preferred it) might not be at my bedside, but might be at baby's bedside after she is born, depending on where he is working that day.

At any rate, I told her my husband and I would discuss it again (as we have several times). I think we're just going to keep asking the different doctors' opinions and see which one comes out on top. But we also want to talk to Dr. Gremmels, as we have never actually asked him what the odds are of her surviving (since that's where Dr. Fairbanks seems to see the problem). Dr. Gremmels knows her heart better than anyone at this point, whereas Dr. Fairbanks had only just met us.

Monday, April 12, 2010

Tour of the NICU & CVCC

Adam and I met with Dr. Payne for a consult today. He was a very kind man who answered all of our questions and explained to us what would be happening the day that baby is born. When I asked him about a natural birth versus a c-section, he said that they encourage natrual births, because the squeezing of their lungs helps them to have fewer breathing problems. But, he explained what the process would be for both situations.

Once we were done asking questions, we met Melissa who took us on a tour of the Neonatal Intensive Care Unit (NICU). Granted, I've never seen a NICU before really, but I was impressed. Most of their rooms are individual rooms, and have a "family area" (a fold-out couch and a small closet) with a curtain to pull back. They have different sized "cribs" to fit the needs of different sized babies, and the nurses are usually assigned one or two patients each. I found a video on their website for the NICU. While we were looking at the room, Nurse Megan, a childhood friend of mine, found us. She works in the NICU and might be taking care of baby while she is there. We are going to meet with her sometime soon, and she is going to help us get ready for baby entering the NICU.

Then we asked to see the Cardiovascular Care Center (CVCC), since that is where she will go after her heart surgery. They, again, have individual rooms for each child, but they are much bigger, and so are the "family areas" in each room. Adam was happy to see that there was an X-Box hooked up in the room we looked at (that ment that he could bring his PS3 in if he buys an HDMI cable ~ and he did buy one online as soon as we got home!). She will probably be here a little bit longer than she will be in the NICU, so it's nice to see that they have a little bit bigger rooms. You can take a virtual tour of their rooms.

While we were walking through the NICU and the CVCC, we saw lots of babies (and children in the CVCC) that were hooked up to different tubes and monitors. Dr. Payne described what she would be hooked up to in about the first 5 minutes of her life. This reality of everything that she is going have to go through is starting to hit me hard.

Thursday, April 8, 2010

"Childbirth Preparation Class" No. 2

Too many drives to Minneapolis this week (and next week too!). But at least this time we didn't have to pay for parking! After 6pm they stop monitoring the meters, and since class started at 6pm (and since we were a couple minutes late), we didn't have to pay when we parked on the street.

It seemed like there were fewer people at class this week, but we sat in the front this time, and I didn't turn around much to look behind me.

This week Katy talked about pushing, and how you're supposed to "push like your pooping." Since when you are pushing, you will have a nurse in with you the whole time encouraging you and guiding you, she wouldn't go into a whole lot of detail. But she showed us a couple more videos.

We also talked about back labor, and how it is most common when your baby is "sunny side up" or OP (basically facing your front instead of facing your back or spine). She mentioned a website, where they talk about how you can try to get your baby into that ideal position where baby is facing your back. She said a lot of it has to do with posture. Women used to be on their hands & knees scrubbing floors and doing chores and what-not, but today we sit slumped back in a computer desk chair (which I am currently not slumped back! :) ). That position encourages babies to be in that "sunny side up" position.

Then we learned about medications and pain relief. She gave us a chart to look at with our partners, and decide where each of us were on the pain med scale. Adam was more on the +3 of using drugs, whereas I was more on the - 3 side (I want to try without, but if I need it, I'll use it). But since I still haven't found any drug that does not have any chance of affecting baby's heart rate at all, I moved myself more to the -5 (I won't use it). Katy suggested I ask the doctor at one of my appointments if there were any options for me.

Class went about two or three minutes past 9pm, so when Katy said, "If you want to leave you can, or you can stay and ask me any questions," Adam booked it for the door, since he had to work early in the morning.

Tuesday, April 6, 2010

Prenatal Partners for Life

A couple weeks ago Mrs. Barrett subbed at school, and having already learned about our baby's diagnosis, referred me to a website for Prenatal Partners for Life. I poked around a little bit on their website and read a couple of people's stories. But of course none of them were about a diagnosis of heterotaxy.

So when I saw an email link at the bottom of the page to share your story, I sent a lovely lady named Mary Kellett a link to my blog, and told her briefly about baby's diagnosis. Mary replied to me with many kind words, and gave me contact information of two different mothers. One who has a baby with GI problems (which our baby might have, as it is common with heterotaxy, but we won't know until she is here), and another for a mother whose baby has another rare diagnosis.

Today in the mail we received a gift of a lamb and a blanket from Mary & her organization. The blanket was made by a mother whose baby was born with Down Syndrome and Mosaic Klinefleter Syndrome, but was sadly called home to be with God when he was about two months old. The blanket is called "Luke's Blanket of Love" and the mother has a website to learn more about the program.

Luke's Blanket of Love

Little Lamb of God

All Transfered to Abbott

I met mom at work, and we went to our "first" appointment at Abbott Northwestern. (We had one other appointment there earlier, but now all my - and baby's - care will be there.) Lindsey, the receptionist seems really nice and helpful. Hopefully she will be just as great as Wendy was at Woodbury.

Just about as soon as we sat down, Jeanine, an ultrasound technician, came out and called us back. She got right down to business, and found baby's heart, then called in Dr. Gremmels. When he looked at her heart, he said he would say the same thing he's said the past couple appointments. She is still holding her own. He said she was at a higher risk of going into heart failure before about 28 weeks, but now that she is further along, she is more likely to go full term without any new complications arising.

They want me to be seen every week for a biophysical profile (just like at Woodbury), but they said that I'm also to the point now where I will be having OB check every week as well. And they want me to have another growth next week.

Since the appointment was so quick and right down to business, Jeanine didn't give us any ultrasound pictures.

Monday, April 5, 2010

Maternity Photo Shoot

Today Jessica Person from First Day Photo came out to our house and took pictures of all three of us! She is a photographer (who I found out does a lot more than just babies... she's going to do a photo shoot with Sarah Palin & Governor Pawlenty! And I guess she was supposed to be the one teaching our "Childbirth Preparation" classes, until that came up!) who works with Now I Lay Me Down to Sleep to photograph babies (and mother's bellies) who might not make it. She was wonderful to work with and I would highly recommend her to anyone who is looking for a photographer for a maternity shoot or a newborn shoot! Thanks Jessica!!!

You can check out our photos, just make sure that you enter the password "expecting" to see them!