MFM appointment update

Yesterday, Matt and I met with a Maternal Fetal Medicine doctor to discuss trying again. I was pretty nervous to see him because I have seen another MFM with this practice that was not hopeful that we would be able to have a healthy pregnancy. The last doctor we saw was very young and looked more at the statistics than me. I knew this doctor was nice because I had seen him when I had been admitted there with IUGR and Pre-eclampsia. He was very friendly and we even joked around a few times.

He said that there is no way he can tell us for sure how well we will do. My case is hard since I don’t have just LUPUS, or just Kidney Disease. If I do develop Pre-eclampsia again, it would probably be later in the pregnancy. He was very optimistic about trying again and he said that now is the best time to do it since the Lupus is quiet and not flaring right now. He also said that the sooner we do it the better since my kidneys are pretty stable right now.

We discussed IVIg, but he said that it is not a treatment they do there, but he would research it and let me know if it would be something that would help me.  I told him that from the research I have done, I have found it to be helpful for Lupus, APS, and kidney disease. He said he would look into it and call me next week to let me know what he finds out.  It sounds like he would prescribe it if he thinks it will help.

We talked about what my care next pregnancy will look like. He suggested I stay with my local OB and see him about every 6 weeks. My local OB has already said he will see me weekly, so I think this will be great monitoring. We will also do monthly lab work to check on my kidney function, protein, and anti-body numbers. If pre-eclampsia starts to set in I will be put on hospital bed rest.

The medications I will take during the pregnancy are: Labetalol(hbp), Baby Asprin, Lovenox, Plaquenil, Prenatal Vitamins, and Magnesium. He said they prescribe Plaquenil during pregnancy a lot and they find it to be very safe. As soon as I get a positive pregnancy test I will start Lovenox shots 2x daily and switch to Labetalol for HBP.

We talked about treatments for IUGR and I told him that I had been reading some women were treating it with sildenafil. He had never heard of this but said that it makes sense that it would work and he would look into it and also let me know about it.

The appointment took 45 minutes and went great. I texted my nephroligist after the appointment and he called me right away to say he is excited and will be praying for us. I will see him in November so we can talk about it more then.

So that's my update, We are very excited!

Tuesdays Thoughts

I have been trying to cut back on sugar and eat more fruits instead. Right now, I am eating strawberries.

I made the best Jam yesterday, I had to can it twice since the first time it didn't gel very well.

I am feeling better since starting medicine to treat my Lupus. Wow, I forgot what it feels like to have energy. 

I can’t believe how busy I have been. Even though I don’t work it feels like I have somewhere I have to be everyday, and its keeping me so busy. 

I went shopping for sewing inspiration today and I all could find was a seam ripper- Not very inspiring. 

Maternal Fetal Medicine (MFM) appointment on Thursday, I still need to make a list of questions to ask.

I have lost all the baby weight from Malakai (baby boy 3), now I just need Teddy’s (baby boy 1) weight to melt away. 

I’m getting sad that Malakai’s birthday is almost here. (October 21) I'm thankful for the time I had with him and that I know he is having a great time in Heaven. 

I’m thankful for my husband and his willingness to do all the crazy stuff I want to do.

Fall is in the air, I can’t wait to pull out my leggings.

Would you like a list of the questions I plan to ask the MFM? If so, I could post them. 

Thanks for reading, stay tuned for my MFM appointment update on Friday!

Coffee, I miss you!

I have been missing my cup of coffee every morning. Last week I decided it would be better for my health to cut back on drinking it. I have done well with it, cutting back to no coffee during the week and a cup on Saturday and Sunday. I did it mostly because I can't have coffee without sugar and I have been trying to reduce the sugar in my life. If you know me, you know I love sweets.

I can't believe how bad processed sugar is for my health. My pulse goes up if I eat artificial sugar and processed sugar. That's a horrible fact for a gal like me that loves anything sweet.

I was going to add in here something really corny about how sweet my husband is, but I'm sure you would rather I keep those things to myself.

Coffee is also bad for my body in other ways besides just sugar. It's also bad for my body and it's ability to use calcium. I also got my labs and uric acid was slightly elevated. That can cause gout and I deffinetley don't want that problem. So hopefully reducing some things like sugar and coffee will help it come down.

A great idea for anyone that wants to reduce their coffee intake is to drink it out of a cute little tea cup. I know my tea cups that match my vintage china are half the size of my everyday tableware. Then you still get to enjoy coffee but in a smaller amount.


One of my kidney girl friends wrote a great post on giving up coffee, please go show her blog some love and read it, it will make you laugh, The Bad Bad Beans.

Open Doors

Matt and I have been praying that God would open doors for us as pursue growing our family. As I have stated before, we are hoping to have a baby soon. We know that we won’t be able to get pregnant as many times as we would like, so we would also like to adopt. Surrogacy is also a great option we have been considering; we just need someone to do it for us with great health insurance. 

Before we got married, we didn't see each other until the ceremony and we were talking through the door.

Our desire is to have many children and I (not so much Matt) think it would be cool to cart all these kids around in a new VW bus coming out 2014. Matt jokingly said that if I got a VW and painted it like the vintage VW buses everyone would know who I was by my bus. He thinks it’s kinda funny but I think it would be awesome and super cool. It will probable embarrass my kids.  

Yesterday, I got news of some doors that are opening and maybe closing. I called to make an appointment with a Maternal Fetal Medicine doctor and I am able to see him very soon, next week actually. What is a Maternal Fetal Medicine Doctor I didn’t think I would be able to see him so soon, so I will take this a sign that God is opening the door for us. I also got an email that our Home Study for adoption has not been submitted for approval yet, I was shocked and thought that it would already be at the state. Maybe this is God’s way of slowing down the process and closing that door for the next year or so for us.

Tomorrow, I hope to get so blood work done to see if my kidneys have improved yet. I am praying that they have and I hope you will too. If not, it’s still ok, all my other numbers are looking pretty awesome and the IVIg will help them too.

Once a Month Cooking

Last week, my sister and I did a marathon of cooking keeping in mind my need for less protein. Thursday, we went grocery shopping and Friday morning we made over 36 meals. It was a lot of work but it’s been great not having to think about supper and just pop it in the oven or crock pot. It was a lot of dirty dishes but now dinner is a snap and clean-up is minimal. We only cooked until lunch, so we will have to cook a few more dishes to make sure that we have enough for ever dinner. Here is what we did:

Baked spaghetti: 3 lbs cooked spaghetti mixed with three 24 oz containers of cottage cheese and topped with meat, sauce, and cheese. For meat, we used sausage cut into small pieces and we didn’t put it on the half I would eat for supper.

Mongolian Beef: http://onceamonthmom.com/crockpot-mongolian-beef/. We used half the required meat and added bell peppers, carrots, and onions. We quadrupled the recipe and split it into 6 containers.

Chicken and Broccoli Pasta: http://www.skinnytaste.com/2012/02/chicken-and-broccoli-noodle-casserole.html. We quadrupled the recipe and reduce the meat required. I also did not make this a reduced fat recipe, I used whole milk, and regular cheese and added crème cheese to the sauce. We didn’t have a bowl large enough to mix it all in, so it might be best to only double this recipe.

Mac and Cheese: I used a lot of cheese in this and can’t wait to eat it. When I serve this we will not eat meat. Trust me, it’s got plenty of protein in it. I made a white sauce and added lots of cheese to it and then mixed the elbows in to it all. Sis portended it into pans and topped with more cheese.

Chicken and rice casserole: http://allrecipes.com/recipe/poppy-seed-poultry-casserole/. We didn’t use poppy seeds. We also used organic cream of chicken soup, Yuck. We quadrupled this recipe and reduced the chicken and added more rice.

We bought pans from the Dollar Tree, they were 3 for $1 and they had a nice lid. The one’s we used for her were larger than mine. Everything we cooked is healthy for my kidneys and homemade and we kept protein in mind with each dish.  At the end of the day we had over 36 pans of food.  We are going to have to cook a few more recipes so we have a dinner for every day, but the next one’s will be easy and take less time. 

Here is what my sister had to say about our cooking on Facebook:

Cooking: I highly dislike it.
Washing Dishes: Super highly dislike it.

I spent the morning cooking with my sister - preparing supper for the month. She enjoys cooking - she thought it was fun. I do not enjoy cooking - this was near complete misery.
BUT - My kids enjoyed dinner - it was easy to bake in the oven and resulted in very few dirty dishes. Clean up was a breeze. Plus, this was much more healthy and I didn't have that moment of panic where I had to create a meal out of things in the pantry.

I think I could get used to this - one day of complete torture for a month of peaceful dinners.

Correction: I really didn't do any cooking today. I basically did a small amount of chopping and shredding and small amount of cleaning, Hmm... I guess the only thing I really did was divide food into storage containers and label and place in freezer. My sister did a lot of work. She is really good at this.

If you think you might be interested in once a month cooking - its great! I am sure you can research but don't call my sister. She is MY cooking friend - you will have to find your own.

Contagious

I think it’s time I am real with you, honest, lay it out for you.  I don’t want anyone to have to walk in my shoes for a day just to have a better understanding of my life. Sure, there is a lot that’s not great in my life. My health is crappy, I take more medicine than someone my age should be taking, but I’m not about to die because of it. Sure I want kids, I’ve been pregnant three times, held two babies in my hands, received my fair share of stretch marks. I’m not even afraid of trying again. Complaining about the bad doesn’t make it go away. I’m not going to complain, I’m not discouraged by all this that’s going on.  There are also a lot of really great things in my life. I am going to live my life to the fullest, I am going to love deeply, and I am going to try new things.  I am going to surround myself with people that love me, encourage me, and lift me up. If you’re a discouragement to me then I am going to distance myself from you. Bad attitudes are contagious and they are not something I want to catch. 

This month I have seen a rheumatologist and an OBGYN. I already talked about my appointment with the rheumatologist here: http://2kidneybeans.blogspot.com/2012/08/rheumatologist-appointment-update.html. Last week, I saw my OBGYN and we discussed trying again. He said that when you’re real and aware of the risk and have a good attitude you will eventually get what you want (in my case kids). We talked about getting pregnant again and he said that my chances of getting pre-eclampsia again are only 30% and it will probably happen later. I think that’s awesome and encouraging, I already made it to 25.5 weeks, I was so close, we will make it next time.

He is on board for the IVIg and he said we would work it out so that I could either get it here or up at the MFM. I am going to make a pre-conception appointment with an MFM and then we will be trying again hopefully this winter. He is on board for weekly appointments at his office and monthly visits with the MFM. This may be a little overboard but we want to catch anything before it becomes a problem. We will be controlling my bp with medicine, taking asprin and daily Lovenox shots to control the APS, and doing the IVIg.

I am going to be brave. One day I will be blessed with several children brought to me by God through birth and adoption. I hope that one day I (really the doctors that are helping me) am going to unlock mysteries of these medical problems I have and it’s going to make someone else’s life a little easier. I had a bad attitude last week, but I am going to be positive from here forward.  Life may still be hard, but it will be harder with a bad attitude.  Last week, I was discouraged and I felt like everything was hard; becoming parents is hard, being healthy is hard, being happy is hard. It’s my choice to be happy and have a good attitude. I hope that my bravery will be contagious. 

Job 22:26-29 MSG "You'll take delight in God, the Mighty One,  and look to him joyfully, boldly.
You'll pray to him and he'll listen; he'll help you do what you've promised.
You'll decide what you want and it will happen;  your life will be bathed in light.
To those who feel low you'll say, 'Chin up! Be brave!'  and God will save them.

Winner of the pillow Giveaway!

I am so excited to announce the winner of my First giveaway. The winner of the custom sewn pillow is Amber! I will be hosting more giveaways so make sure you enter!

I love you all for reading my blog! Enjoy this beautiful Sunday.

Counselor Appointment

Please enter the giveaway for a pillow sewn just for you. See the post and rules here http://2kidneybeans.blogspot.com/2012/07/monday-giveaway.html.

Yesterday, Matt and Imeet with a counselor and discuss our three losses. Our social worker had asked us to do this before she submitted the finished home study. She wanted to make sure that once our home study makes it to the state for approval they didn’t have any questions about our losses.  I appreciate that she is thinking ahead, I just wish this whole process was not a series of obstacles we have to pass. 

I was not thrilled. I know it’s not a big deal and didn’t cost us anything but, when I consider all that we had already done to show that we have peace about everything, it was a bit of a big deal to me. We started this process by going through 10 classes that each last 3 hrs where we discussed everything in detail during our home work assignments. We also had to do addition loss worksheets that asked for detailed answers pertaining to the loss of our little boys. We went into great detail about it at our home study. We beat this topic with a stick. I know, you’re thinking it’s not big deal, but I feel like starting a family has been such a huge obstacle for us. No matter what path we pursue there are extra steps that we have to take. 

Having a family is easy for so many people. I know every pregnancy is different and some are not so enjoyable but am I the only one that thinks it’s crazy to hear about the perfect pregnancies some women have? They see the doctor a few times during the pregnancy, push with no pain meds for a few minutes, and bring home a cute little baby that breast feeds perfectly and sleeps through the night at 1 week old. They have a great post-pregnancy body with no stretch marks, puffy face, or bruise marks from the multiple IV’s.  They go on and have a few more perfect pregnancies. I’m certainly not wishing that they had to go through all that I go through to have kids, but I do envy that it’s so easy for them.I also secretly want to tell them that I am not a bad person for having c-sections(they make it sound like anyone that does is horrible). I just smile and laugh and don't say a word about it.

I am glad that the counselor was so nice and I had accidently left the link to my blog on the bottom of one of my e-mails so she had read all my blog posts. She said she liked it. Maybe she will become a follower and go like it on facebook. 

I feel better after complaining for a bit about it all, thanks for reading my blog.

Pyrex Picker

On Saturday, Hubby and I went on a hunt for Pyrex and we were pretty successful. We started out early at yard sales, didn’t find a single piece. The yard sales were pretty horrible and few and far between. So after we stopped and got breakfast we came back home. We were planning to go to a friends graduation party that night and decided to leave early and stop in the Flea Markets around town. I’ve posted pictures of our finds for you.

I had never seen a 1 ½ quart sauce pan by pyrex before. I just had to have it, and I thought it was a great deal at only $8.95.

Hubby had hoped I would forget about my treasures but I didn’t. Yesterday, I was looking up the sauce pan on eBay and etsy and discovered that it is the base to a double boiler. I’m a little bummed that I didn’t get the second pan, but they seem to pop up occasionally so I will keep my eyes open for a good deal. I still think I got a good deal for it with out the second pan.

I didn’t have any Pyrex in the brown, and it was also a great deal. 

That was all we found.  Otherwise the weekend was great at times and other times not so great. I guess that the doctor appointment news was settling in a little more. The new medicine is making me feel a little better, so I hope I am feeling even better after it’s been in my system a little longer.

I have linked this post on Monday Mingle thenaptimereview.com

Don't forget about the giveaway that ends on Friday. Please follow my blog and "like" my facebook page. Read the details here: 2kidneybeans.blogspot.com 

In order to get 2 more chances to win, tell 4 of your friends about me and send them over (make sure they know to tell me who sent them). You can also go back through all the previous posts and earn those chances too, its not to late!

Rheumatologist Appointment Update

Yesterday, I met with a new specialist that I will be adding to my team of doctors for my next pregnancy.  He was really great and I felt like he was willing to sit and talk with me for as long as I needed. He started by asking for my history and how I have come to this point and the entire time he took notes.  I’ll start my update with the good news and end with the not so good news.

I was must excited to see him and talk about IVIg treatments, which he was VERY familiar with. He said that they are great because they have basically no side effects, but the FDA has not approved them for many treatments and that makes it hard to have insurance cover it. They do work for auto immune issues but it’s hard to get it covered. Also, because the insurance may not cover it they are very expensive out of pocket. I’m not talking like an expensive steak dinner, but like a used car expensive. The treatments run around $7,000 and they have to be done on a regular basis, around every 2-3 months. He said that if there is a less expensive treatment that works insurance  would not pay for it. We discussed using the treatment in pregnancy and he said that I would be a candidate for using it since my last pregnancy did not make it full-term with the treatment I was already taking. He also said that he was almost positive that my insurance WOULD COVER IT for the duration of a pregnancy. THAT IS AWESOME! From what I have read it will help prevent Pre-eclampsia from setting in so soon (or at all) and it helps the kidneys and my clotting disorders. He suggested I call and make an appointment with the MFM I will use and make a treatment plan before we start trying and ask them to do at least one dose before we try. 

He asked me a bunch of questions about symptoms I have experienced and problems I have had and he looked at my last lab work. He said that I do have Lupus because of some of the things we talked about, like my hair falling out and being so tired (among other symptoms and my lab work). He also said that my anti-bodies are as high as they could possibly get which is why I developed problems so soon in my last pregnancy and that I would need to add the IVIg treatments next time. He prescribed a new medicine and said that it should help my kidneys, my hair, and give me more energy. Most of all, he said it’s important to start taking something now to prevent the Lupus from getting worst and I am very lucky that with my numbers it’s not worst. 

It was refreshing to have someone sympathetic to my problems and he did not make me feel guilty at all, but was reassuring that it was because of the lupus. No one has ever given me a hard time for getting so tired so much but it’s a horrible feeling to be 26 and not able to go and go like most my age. Or have a list of things I want to do in one day but only able to finish half my list and fall asleep at 8:00 that night. I know most might be disappointed that a pill is being added to the daily treatment but I am actually excited to start feeling better.

He also looked at my kidney function and did say that it’s low but did not say anything to the fact that I should not try again. He just said that next time I need the see the MFM monthly and my local OB weekly. I’m looking forward to all the upcoming doctors appointments and getting a great team together. I hope you will continue to read my updates and pray for me, Matt, the team we choose, and most of all the baby that God already knows we will welcome into our family. 

I Samuel 1:27 For this child I prayed; and the Lord hath given me my petition which I asked of him: KJV

Also, don't forget about the giveaway that ends next Friday, comment on this article to receive 2 more chances to win, read here for the details http://2kidneybeans.blogspot.com/2012/07/monday-giveaway.html