Archive for January, 2009

The End of the Saga??

Last week, literally when I got off the plane, I had to hurry to my appointment with the Hematologist. All of the blood work came back normal except something called a PTT. Not really sure what it is, but it’s one of the Lupus markers. So, I don’t seem to have any clotting problems, nothing else abnormal except for the MTHFR mutation. She said to keep taking the Folic Acid, I can take the Baby Aspirin IF I want to. She said it wouldn’t hurt, but didn’t see a need for it. She then told me to go to the Rheumatologist and see what he said. She said as far as getting pregnant, I shouldn’t have a problem as long as I’m taking the folic acid and she didn’t see any reason to have to take the Heparin for it!!! She wanted to see me back in 3 weeks.

The next day, I saw the Rheumatologist. All of the tests he ran came back normal. I asked about the one PTT and he said the OB had ordered it back in November and it was normal, so he thinks this was a false positive. BUT, he wants to recheck it in 2 months and see me one more time after that. He said there are NO signs of Anti Phosphsomething Syndrome and NO signs of Lupus (other than these two abnormal tests). Since ALL the other tests were normal and I don’t have any signs or symptoms he doesn’t think I have it. He did say that doesn’t mean this isn’t the start of something, I *could* be developing Lupus or something. He couldn’t promise that I wouldn’t, but right now, I’m fine. He also told me that some people have positive ANAs if they have a first degree relative with Rheumatoid Arthritis. So, seeing that my mom and grandma have it, that might be why. He saw no reason I shouldn’t try to get pregnant and have a normal pregnancy… again as long as I’m on the Folic Acid. He said no Heparin or Lovenox and probably not even the baby aspirin is needed.

I googled his diagnosis code on today’s paperwork. It means: Nonspecific abnormal histological and immunological findings.

So, I go back to the Hematologist in 3 weeks, do more blood work in 2 months and then go to the Rheumatologist. And of course, if I develop any symptoms, I will go in. But, otherwise, I’m good!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! And if I’m not on Heparin or anything, I can have a homebirth!!!!!!!!!!!!!!!!!!!!!!!!! Whooohooooo!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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My Flight Home

I wrote this on the plane to NY this week.

I don’t think flying economy ever again will be an option for me. Today, I had to take a last minute flight home because my Uncle John passed away. It was extremely expensive, but I needed to go. I would have regretted it if I didn’t. I needed to say goodbye, pay my respects, and be there for my family. So, never flying first class before, I didn’t even realize what the codes on the ticket meant.

The man who collected my ticket said “Oh, you’re first class, Ma’am.” Ooooh…. He led me through a red carpet area. I got a seat in the first row by the window. It’s a little bigger than a normal seat, only two to a row. The seats have a built in pillow and are much more comfortable than a regular seat. They serve you a drink even before takeoff. There was a “spot” for your drink to sit. It pops out from a center console. Headphones sat in the pocket in front of me and there was a little button that alerts you if you have a phone call. I don’t think I’ll ever be that important – except to a few teary eyed little ones waiting for me to return home.

Once in the air, my order was taken. Chicken or pasta – I chose pasta. I was then given ice water and heated up nuts. Too bad I don’t like nuts. A flip down TV was opened and a movie is now playing. I’m not sure what it is. It’s set back in the 1700s and I don’t usually enjoy those kind of movies, but it’s background noise.

The sky is dark now as I travel east, if I look out the window behind me, I can see beautiful colors – reds, oranges, and yellows.

Dinner was soon served. Stuffed shells with marinara sauce, rolls, and chocolate cake. I laugh remembering how I thought I’d be starving all the way to D.C. and then I would have to run from gate to gate with no time to eat. Now, I am nicely stuffed! However, they keep refilling my water and my bladder is getting full and the seatbelt sign is ON!!!!!

Ah, finally, they turn the sign off and I get to use the first class bathroom – which turns out to be the same as every other bathroom I’ve been in on a plane. The flight gets into D.C. on time and I hurry to the shuttle to take me to another gate. Once I get there, I find out the flight to NY is delayed 40 minutes or so. I make some phone calls and wait.

The second leg of my journey was on a brand new 66 passenger plane – not sure if that’s good or bad. It is nice, it looks new, very clean… but, yeah, um… how much has it been tested? How many times has it been up in the air?

It is a quick flight and stays in the air the whole way! As we landed in NY, I see it is snowing lightly. Ah… home. NY in January. It is always nice to go home – even for a not so good reason. Yet, this isn’t my home anymore. My home is in TX with MSJ and our girls and right this very second I miss them horribly.

My Miscarriage Experiences

A reader asked me about my miscarriage and I thought it was important enough to make another post about it. Miscarriage hurts emotionally and many people have a hard time talking about it. I still get teary eyed, but I know it has to be talked about. That’s how I heal, and that’s how other people learn. I don’t mind telling about my experiences. I only hope it helps somebody.

First, I have to say I’m not a doctor or a health care professional. I can only say what happened to me and what my doctors have told me.

I think the most important thing to know is that not all miscarriages are the same. The internet is contradicting, but sometimes it has to be. Even with my four miscarriages, none of them were exactly alike.

This last one in November is fresh in my mind, so I’ll start there. We tried to get pregnant for 9 cycles and with the help of Clomid – something I have never had to use before – we conceived. I tested positive around the time I expected my period. I was never one to get a positive test before 12 days past ovulation. 2 weeks later I saw just a tiny bit of pink when I wiped. It was so little, someone else may not have even noticed. I did, probably because I check the TP after I wipe. This is something the other miscarriages “taught” me.

I freaked, I prayed, I waited. No cramps came. No pain. Just more pink streaks on the TP. At this point, I noticed that my breasts didn’t hurt anymore. After 12 hours of waiting the pink started turning more of a red color. Not a constant flow, just spotting every time I wiped. I decided to take another pregnancy test and when it was faint, my heart dropped. No longer two dark lines… It was Sunday. I didn’t know if I should go to the ER, urgent care center, or just call someone. I called both my midwife and my OB. When the OB called back, she said there wasn’t any point in going to the hospital, they won’t be able to tell anything or do anything. This was just a wait and see. She also said there was a chance that because I was on the Clomid I conceived twins and was losing one of them. As horrible as that was, I clung to that “hope” for the day. I spent the day in bed, watching TV, praying, and cuddling my kids.

No cramps ever came. However, I felt pressure on my cervix. This was something I often feel when I get my period. I took Motrin because it was uncomfortable. The bleeding picked up, I even started to pass clots, and as much as I tried to hang on to that hope, I knew it was over. I’m not an overly optimistic person. I try. But, I find myself thinking the worst and praying for the best.

I went to see the OB on Monday. I still had heavy bleeding. She said my cervix was closed, which almost made me hope again, until I found out that didn’t mean anything. They didn’t do an ultrasound. That kind of made me mad. They did draw blood. My HCG levels came back at 26. I had to go back Wed and Fri to have it done again. They turned out to be 18 and 15, respectively. I ended up having to go back a couple weeks later until my levels went down to under 2.

I continued to bleed and felt a lot of pressure, but no cramping. NONE. Remembering the pain from my 2nd miscarriage, I was grateful not to be experiencing that again. But, before we get to that one, there’s was #3. This was the “easiest”. I had known I was pregnant… I could feel it. My temps were still high and I was about to test when the temp dropped suddenly and I had cramps and bleeding. I went in to see my midwife who took blood. My levels weren’t high enough. She called it a chemical pregnancy. I didn’t experience a lot of pain – it was like a normal period with normal cramps. There weren’t any clots. It was a little easier to deal with because I hadn’t been pregnant very long.

My 2nd miscarriage was by far the worst. I was 6 weeks along and started cramping first. A LOT of cramping! It was 100 times worse than my period. I stayed in bed begging God to stop the pain. Finally, I started bleeding. And on Sunday, I passed a big clot. Again it was the weekend AND the holidays, the doctor said if it was a miscarriage, there was nothing we could do. So, I stayed home and went to see her Monday when she confirmed that it was a miscarriage. They did the blood work to make sure the levels dropped enough. I think they did, because I don’t remember having to go in more than twice. The pain of this one was very hard to deal with. It is what I picture to be a “classic complete miscarriage”. When someone says miscarriage, this is the one I think of.

My 1st miscarriage was my 1st pregnancy, so I had NO idea what to expect. I actually didn’t realize I was pregnant until I was miscarrying and that was at 8 weeks. I was young. I didn’t understand. The cramps were regular period type cramps, the bleeding heavier than usual, and I remember some clots. Other than that, thankfully, I don’t remember much.

I have been very blessed that I have never needed a D&C.

So, as you can see, each one was a little different. I’m not sure there is a NORMAL way to miscarry. I have been told if I have any cramping or spotting, I should call the doctor right away. So, that is my recommendation to any of you reading this. Don’t worry about what time it is or what they’ll think of you – CALL your midwife or OB or even your family doctor.

With that being said, I know of many ladies who bled and/or cramped in early pregnancy who went on to carry their baby to full term. So, there is hope even if you are bleeding or cramping. Don’t give up that hope!

Back to my most recent miscarriage, because it was my fourth, the doctor agreed to do some testing. They usually don’t until you have had 3 miscarriages in a row. I never had that. But, I’m thankful the doctor wanted to do the testing. I never thought I’d know WHY I lost any of these precious babies. But, the test results came back and there are possible reasons. No one can say for sure that this MTHFR mutation is why I keep miscarrying. And no one can say for sure that the positive ANAs were the cause. It seems that my body is somewhat responsible for these miscarriages. I really wish doctors would test women who have a miscarriage for some things. At least the folic acid. That’s an easy test with an easy fix. I always knew folic acid was important to take, but I thought what I took in the vitamins was enough. I knew if I didn’t have enough it could cause my baby to be born with spinal defects, but I didn’t know that not having enough could cause a miscarriage. Why not test every pregnant woman for the MTHFR mutation? Or at least test for it when someone miscarries the first time. To think that I may have been able to save my babies… if only I had known.

I hope sharing my experiences can help. Just remember every person, every miscarriage is different. Please go see your midwife or doctor if you have any concerns.

To the reader who asked, I hope this helps. I pray that you are not having a miscarriage and everything is fine with your precious angel. Can you get in to see your doctor any sooner than Friday?
God bless.

Still In Cloth

NKJ got new diapers! One of my favorites is a Blueberry AIO pocket. She is starting to outgrow her medium size diapers, so I had to get some new ones. I know she will potty train soon, but Mommy couldn’t help but buy a few more large size cloth diapers.

Where do I get them? http://www.nurturedfamily.com

I’m sure there are some of you asking “WHY in the world would someone use cloth diapers nowadays?” I asked that question last year and probably even added “Are you crazy?” Then I learned more about it. There are no pins nowadays, you don’t have to fold the diaper and try to pin it around a wiggly baby. Sure, you CAN do it that way if you want. But, you don’t have to. It is SO easy. I wish I knew years ago how easy it was.

My two favorites are regular AIOs (all in ones) or pocket AIOs. Regular AIOs are just like a regular diaper except made out of cloth and velcro type fasteners. Nothing comes apart, nothing to pin, nothing to fold. Very easy.

A pocket AIO is almost as easy except it usually has an insert that comes out. So, instead having one piece, you have the diaper and the insert to stick in the “pocket” – an opening usually in the back of the diaper. The plus with this? It dries faster. But, you do have to “stuff” the insert in and depending on the diaper, possibly fold the insert (just in half or thirds, nothing special) and then stuff it in. A little more time consuming, but some people think it’s worth it.

You can usually choose between a velcro fastener and snaps. We have both. Velcro is definitely easier for other people, so when we go to church, I fill the diaper bag with those. But, NKJ can get the velcro diapers off – just like she can with disposable diapers. However, she hasn’t figured the snap diapers out yet.

This is where you say “But, you have to WASH them!!” Yup. You do. No getting around that. However, I do so many loads of laundry a week, what’s a couple more? Simple… rinse, wash, rinse, rinse, rinse and dry. No biggie.

There are other types of diapers and other ways of doing things. Each person finds their own little niche in the cloth diapering world. This is mine.

Not only will you be helping the environment if you use cloth diapers, but there are health concerns with disposable diapers including infertility, asthma and having them contain poisons. Read on for more information: http://www.nickisdiapers.com/pages/HealthConcerns.php

This Time, A Rheumatologist

There is never a dull moment around here. Lately, my weeks have been full of doctors, needles, and worries. Today was no exception. I had to see a Rheumatologist. I was once again pleased that I found a doctor whose office was easy to get to, clean, and the staff was efficient. The doctor came in within a couple minutes of the nurse leaving. He had a good bedside manner. He was kind, caring and nice.

Of course, I got no answers. I didn’t expect any, but I can always hope. He did a full exam from head to toe and didn’t find anything “wrong”. My liver and spleen seem to be in their correct positions! No rashes, no swollen joints, no dry eyes! So, that’s good news.

The doctor then told me that although I have no symptoms, he would run more specific tests to see if I have Lupus or some other things. He said that because I have four living children, that he thinks the reason for my miscarriages were more likely that something was wrong with the baby, rather than something auto-immune. But, can’t rule anything out yet. And of course, I have that MTHFR mutation.

He ordered more blood tests and said he’d see me back in two weeks. Yay!! More doctor appointments! Can’t wait. I had to go across the hall to the lab. Thankfully, they had a bed for me to lie on. The lady had trouble with one of the doctor’s orders and had to call the office only for them to say they’d have to call back. So, we waited and waited and finally the call came and we got on with the fun stuff. TEN tubes of blood and 90 minutes later, I was done!!!!!!!!!!

Now, I wait again. I hate waiting. I’m not a patient person. I just hope that I get some GOOD news in two weeks when I go back to these two doctors. Please continue to keep me in your thoughts and prayers.

Another Appointment, Still No Answers

Today I saw a Hematologist. Her office was in a brand new medical building near the hospital. It was clean!! I like clean doctor’s offices. Their office was almost empty, only one other lady was in the waiting room. The nurse called me fairly quickly and within a few minutes, the medical assistant came in the room.

She asked me a bunch of questions that were hard to understand because of her accent. So, who knows what I answered yes to – LOL! A few minutes after she left, the doctor came in. She was very nice, I liked her immediately. She went over my history, talked about the results of my blood tests and what she wanted to do now.

She repeated the same old “folic acid deficiency” and “possibly blood clots being in the umbilical cord or placenta and causing the miscarriages”. She said that my positive ANA tests would be more handled by the Rheumatologist, but, that she and the Rheumatologist kind of overlap. After hearing about my LOVE of needles, she decided to let me get stuck only once. She gave me a list of all the tests she wants done. I’m to take that to my appointment on Friday and add it to whatever tests they want!!

She asked how many more children we wanted and I answered “just one more”. She laughed and asked how many times I said that 🙂 She asked how likely #6 was and I said that 5 was enough. Depending on the results of my blood work, she said she may put me on Heparin or Lovenox if I was to get pregnant and if we’re going to be TTC, then possibly even before I get pregnant.

Apparently, THIS makes me high risk (if I get pregnant). THAT means no homebirth with a midwife. Now, I haven’t ruled that out yet. Because I don’t know for sure WHAT it is I have and if they’re going to prescribe a blood thinner (other than the baby aspirin). But, it’s something to think about. I told her that I’ve used midwives and had natural births and I wanted a midwife and a homebirth. Her jaw about hit the ground! After she picked it back up, she said she wasn’t against midwives and homebirths, but I would be risking my life having a homebirth.

I still have to wait to get more answers. I may not need the Heparin, I may not have Lupus, maybe I just need extra Folic Acid. I’m trying to be optimistic.

I guess I need to decide… will I be able to give myself daily injections or even let dh do it? I hate needles. If I’m not laying down when I get blood drawn, I faint. Can I do that? And secondly, if I can’t have the birth I want, if I’m going to be forced into using a high risk ob, a hospital, maybe induction or c-sections… do I want that?

I want another baby so much my heart hurts. But, I have been blessed with four beautiful little girls. Maybe that’s what I’m meant to have. Maybe I’m not meant to have more. And maybe this last little angel was to help me find out all this stuff that is wrong with me. And yet, my arms yearn to hold another little baby, nurse her, and love her forever.

As my dreams fade away… I just want to go back to not knowing any of this.

Today’s Appointment

Today I had an appointment with my regular primary care doctor. I had called her last week after my appointment with the internal medicine doctor – the one I couldn’t stand. She had looked over my file and agreed that I didn’t need the internal medicine doctor and I could just see her.

In I went, hungry, because I had fasted since midnight in preparation for blood work. The doctor, who I have always liked, was wonderful. She listened to everything. She talked to me. She even promised to get me some answers.

She stepped out of the room to call a hematologist herself. When she came back in, she said the hematologist wanted to see me, that this MTHFR mutation was more than just folic acid. She explained it a little to me. But, it’s still hard to understand. Yet, easy at the same time. If that makes sense.

Her office actually made the appointments for me. Tomorrow I see the hematologist and Friday I see the Rheumatologist (for the positive ANAs). Wow! They sure are quick and thorough. Now, I’m wondering WHY I didn’t just go to her in the first place.

Before I left, she made sure I knew to call her if I had any questions or concerns, to talk about results or anything else I needed.

I’ll update again tomorrow!!!

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