Honestly, it was a hard week. One of those where I spent time pondering on "what might have been." The second time we were pregnant, we announced it to the family the day after my cousin announced her pregnancy. I was excited that our babies were going to be so close together, within a month of each other. She had her baby this week. I was so happy to see those sweet little pictures, but it hurt pretty bad too. My first due date is a month from today. It's hard not to think how life would be right now if I still had that baby with me.
Sometimes I hold Jack close to me and just cry and cry- I remember how it felt the first time I felt a kick, and how I could feel him move and grow; not even knowing he was the biggest miracle of my life. I just hold him close and let the gratitude wash over me. I'm so thankful he is here with me.
I wish I would have appreciated the pregnancy/birth/newborn stage a little more when they were happening. It was wonderful and amazing, but I automatically assumed I would have that experience again without difficulty. Had I known, maybe I would have slowed down the wishing for him to reach the next stage or grow bigger. I spend my days telling myself i'm ok with all of this- even though I'm not.
So, we went to the hemotologist. For sure, I have the Leiden Factor V and Homozygous MTHFR. But WAIT- there's MORE! I thought this appointment was going to be going over information regarding the newly diagnosed MTHFR, which we did, but to my surprise he had a lot more information for me. He thinks I have something else. (of course, why am I not suprised.) While the MTHFR increases all those risks I discussed in the last post, he is not convinced it really added to the miscarriage unless my homo cysteine levels were really high (which is unlikely as long as I eat fresh food and take vitamins, vitamin B helps keep the levels down). This is especially because I have the mutation that has the genetic code A1298C, which is apparently uncommon, and not associated with the blood clotting as much as the C677T. That is good news at least. I should always take a high B vitamin to help with the risk, but at least I lucked out with having the less common, less harsh type.
So let me back up for a second, a few months ago I had ANAs come up positive on some tests. ANAs show up when you have some sort of auto immune or arthritis problem going on. My arthritis panel came back totally negative, so it pointed to an auto immune problem. We assumed it was thyroid auto-immune since I already have problems there, but investigating that further seemed to say that it was not thyroid auto immune. So they put it on the shelf and said we probably won't know why I had ANAs showing up unless I developed other symptoms.
Moving forward, my wonderful hemotologist put all of this together. The miscarriages, the clotting, the ANAs, and other patterns, and he has a new theory. Though he tested my homo cysteine levels to help rule out the MTHFR as a cause (won't have those results for another 2 weeks), he believes I may have a condition called APS or Hughes Syndrome. It is not a for sure diagnosis, I had some tests done for the antibodies, and will have to have several more. He said the antibodies can show up after a miscarriage, or show up during a pregnancy and cause a miscarriage. So the only way to really tell if the autoimmune problems are actually attacking the pregnancies is to test 3 months after a miscarriage, and see if the levels have gone down. Next time we think about getting pregnant I'll get my levels tested beforehand, then again as soon as I get a positive pregnancy test. We are hoping that the levels would not increase as soon as I was pregnant- that would be bad. If I understand it right, the antibodies make the blood clot even more in addition to my other two conditions. Sometimes I wonder how I have never actually had a blood clot myself. We just have to assume there was micro clotting in the placentas in the pregnancies we lost.
If this is the case and I have these antibodies in the blood work that comes back, the most I can hope for is that the antibodies that caused my third miscarriage were still in my system from my second miscarriage since the two were so close together, and hope that I don't actually have this auto immune disease but that the antibodies were just a result from the miscarriages. Obviously, it will take a while to tell, and that will be hard to wait for, but I have an apt in two weeks when the blood work comes back and I'm hoping everything will make a little more sense then. I'm still pretty confused.
If I do have this, it would continue to add to the blood clotting risks, and next time we want a baby, I'd need to be on asprin while trying to conceive, then switch immediately to Lovenox injections as soon as I was pregnant. I'd need to do the shots the whole pregnancy and 6 weeks postpartum. Basically, it's the same thing we did last time, but it didn't work last time. That's the only treatment available right now though. The good news is he said the asprin/lovenox don't work in a way where they would be contributing to the miscarriages or making it so the placenta wasn't able to attach properly.
I thought I would let Wikipedia explain a little about this condition that we are investigating. It doesn't sound too far off. Especially the part about the migraines.
Antiphospholipid syndrome or antiphospholipid antibody syndrome (APS or APLS or), often also Hughes syndrome, is an autoimmune, hypercoagulable state caused by antiphospholipid antibodies. APS provokes blood clots (thrombosis) in both arteries and veins as well as pregnancy-related complications such as miscarriage, stillbirth, preterm delivery, or severe preeclampsia.
Antiphospholipid syndrome can cause arterial or venous blood clots, in any organ system, or pregnancy-related complications. In APS patients, the most common venous event is deep vein thrombosis of the lower extremities, and the most common arterial event is stroke.
In pregnant women affected by APS, miscarriage can occur prior to 20 week of gestation, while pre-eclampsia is reported to occur after that time. Placental infarctions, early deliveries and stillbirth are also reported in women with APS. In some cases, APS seems to be the leading cause of mental and/or development retardation in the newborn, due to an aPL-induced inhibition of trophoblast differentiation. The antiphospholipid syndrome responsible for most of the miscarriages in later trimesters seen in concomitant systemic lupus erythematosus and pregnancy.[2]
Other common findings, although not part of the APS classification criteria, are thrombocytopenia, heart valve disease, and livedo reticularis. There are also associations between antiphospholipid antibodies and headaches, migraines, and oscillopsia.[3] Some studies have shown the presence of antiphospholipid antibodies in the blood and spinal fluid of patients with psychological symptoms.[4]
Boy oh boy, I really don't like all those risks, to me or a future baby. Especially thinking of handicaps the baby might have, it just breaks my heart. In a way, I guess it is a tender mercy that our bodies have the ability to reject pregnancies early on that if they would have continued, would have produced a child unable to survive or thrive. But you really never know what might happen, Jack is totally healthy as far as we know. He also is the cutest kid known to man:
 |
| I'm Just Sayin..... |
So basically the way I feel about all these results and theories is simply "This really isn't fair." But most hard things we go through feel like that. And lots of people have it way harder than me. But it still feels like that. However, I am so thankful for the scriptures that have such a specific and relevant example to my situation and show the compassion Christ had on a woman.
Mark 5:25-34
25 And a certain woman, which had an a issue of blood twelve years,
12 years sounds like a long time that this woman had been suffering, despite how many doctors she had gone to, but Christ healed her completely in His time according to her faith, and for His own reasons. This scripture gives me hope that with my faith and in His time, and with His power, I'm sure it is possible for us to have another healthy child someday.
Anyway, I actually meant this post to be more about daily life now and what I've learned:
Just do it. Sometimes this has to be my motto for a little while. I remember our band director would tell us this a lot in high school; and though we often made fun of him for it, the idea stuck.
26 And had suffered many things of many physicians, and had spent all that she had, and was nothing bettered, but rather grew worse,
27 When she had heard of Jesus, came in the press behind, and touched his a garment.
29 And straightway the fountain of her blood was dried up; and she felt in her body that she was healed of that plague.
30 And Jesus, immediately knowing in himself that a virtue had gone out of him, turned him about in the press, and said, Who touched my clothes?
31 And his disciples said unto him, Thou seest the multitude thronging thee, and sayest thou, Who touched me?
33 But the woman fearing and trembling, knowing what was done in her, came and fell down before him, and told him all the truth.
34 And he said unto her, Daughter, thy a faith hath made thee whole; go in b peace, and be whole of thy plague.
Anyway, I actually meant this post to be more about daily life now and what I've learned:
Just do it. Sometimes this has to be my motto for a little while. I remember our band director would tell us this a lot in high school; and though we often made fun of him for it, the idea stuck.
Sometimes I feel like I was in such a hurry to jump back into life and start working on things that made me happy again, that I might be a little overwhelmed. Not in a bad way though, it is actually really good to be working on so many positive things in my life. I have many priorities right now:
-Well first, the normal stuff comes first. Being Jack's mommy takes up most of my time. Then there's the cooking and the cleaning, making sure Jack eats something nutritional (hopefully), the budgeting and bill paying, planning appointments and babysitters, shopping and play dates, etc.
-I've been exercising early every morning this week, my plan is to do 4 days a week. (from 6-7. boy it is hard to get up to be to a class by 6)
-I've been working on scripture study (nothing like starting all your goals again at once)
-I started school again! Officially. I'm now in an online program. I'm really happy about it; it seems like a really well put-together program so far. The good news and bad news is, it's going to be pretty rigorous. I appreciate a challenge but it's just a time issue. I want to finish quickly so I can start making money, but if I want to finish by about December 20th I'll need to put in about 23 hours a week (does Jack even sleep that much?!) Luckily, I have until next June to finish it, but hopefully sooner.
-Prepping for our move. This is a little on the side thing now, but we move in 7 weeks. That creeps up on you if you haven't started cleaning and going through things and packing the non-essentials.
-I'm still working every Saturday. This is more of a "sacrifice" now because of the time needed for school, and the packing projects since that is the day Kevin is home from work and we try to avoid heavy duty projects on Sunday. But I love my job and we need the money; after all, I only get to enjoy this job until we move.
-I'm enjoying playing percussion even though I didn't think I'd have this much going on when I signed up. I try to practice once a week and then I have rehearsal once or twice a week. Our concert is in two weeks so it won't be too much longer.
-I'm in charge of teaching the 3 and 4 year olds at church every Sunday. I usually only prep the lesson every other week and it only takes a few hours to do, but believe me, if I procrastinate it really hangs over my head! Luckily those kids are great and make it worth it.
-Another thing that I am about to start is something I just signed up for because I couldn't resist!! Being a camp counselor for a summer music camp for kids! Really that's all I want to do in life :) It's only an hour a week, but I decided not to start until July because doing it with percussion is a little much, especially because I need someone to watch Jack during it. I am so looking forward to being a volunteer for such a cool thing!
- Technically I'm still doing that tutoring website, but there seems to be no students in this area, so it is not taking up any of my time right now. Maybe in our new area.
-I'm a social butterfly. Ok maybe not quite, but, I've been trying to spend a lot of time with the dear friends I've made in this area before we move. I will miss so many people here.
-Medical stuff. The appointments and all the stuff with it actually takes a toll. It's emotionally trying, and stressful to make and keep appointments with specialists and labs and whatever else is going on. Waiting for answers is hard too.
So, Just Do it. It's hard to do all of it, but it's manageable and I still have enough "spare time" to watch an episode of Arrested Development here and there. I have some time to blog since school doesn't have actual "due dates." My life has some peace. My house might not always be spotless but I can usually manage to get the important things done. I just have to remember not to complain and to be happy with what I'm doing- I'm usually more productive when I do more things because I use my time better. Just do it-with a smile. Thanks to President Hinckley, I usually post the saying "Forget Yourself and Go to Work" somewhere in the house. It is very motivating to me, to just put aside feeling sorry for myself and actually do something. That usually makes me feel better anyway.
This is how I'm coping with everything, and how I'm staying happy- not by staying busy, but by staying productive.
Just let me make a comment on every post, alright? ;)
ReplyDeleteI wish I could spend more time with you before you leave! I will just have to start making more trips to Utah. Too bad my sister is leaving Utah right when you get there. Lame.