Sunday, July 31, 2005

Tomorrow is Yet Another Hurdle

I'm so anxious about tomorrow. I get up early in the morning to be on the road by 5:30 a.m. to go for my beta. I will find out if this has worked, or if we need to come up with a new plan. We don't even know if there are any frozen embryos; the embryology lab will send us a letter letting us know the summary of our eggs, including how many (if any) were frozen. It'd be nice to know this information upon cryopreservation, but that's not how things are done in this lab. If we are without frozen embryos, I wouldn't ask my cousin to donate again. She was medically cleared to fly on Thursday, July 28th, so we got her on the first available fight the following morning. Her bloating and fluid retention has resolved, and she's happy to be back home even if it's only for a week - she leaves for her final semester on Aug. 5. I felt terrible that she had the complications that she did (DH felt even worse), but she didn't mind, and is already saying that it wasn't that bad. Aside from that, her schedule wouldn't allow that kind of time off until next summer. Her sister, S who is 23, has volunteered as well, but she's out of school and working - hard to take a month off.

I want this to work desperately - but just because I want it (along with everyone else we know), doesn't mean it will happen. I held a one month old this weekend. Our in laws had us over for dinner on Friday and invited their 24 year old neighbor. She's married to a 52 year old pilot, had a 2 1/2 year old and the baby. Dh & I took turns holding the baby, Chris. He was so sweet, and so wee! Mr. Right was great with him, although nervous like he thought he might break him. I was happy holding him, but also thought, I hope I can create one of these guys (or at least have one). Emotionally, I still feel at fault, although intellectually I know that I am not. I do, however, believe that we choose our lives - the people we're born to, what we do along the way, people we meet. Of course, when we're born we forget all of this and we can make the wrong decisions. Our gut / instinct lets us know if we're doing something we're not supposed to - it just doesn't feel right. Inversely, our gut 'clicks' if we are doing what we're supposed to, in order to learn whatever lesson we need to learn in this lifetime. So from that standpoint, I did choose to have this mutation - to learn what ever lesson I need to in life. You learn more with adversity and challenge than you do without it.

I hope this doesn't sound preachy - that's certainly not my intention. It's just what I happen to believe, what makes sense to me.

I awoke sad this morning; I had a dream that Margaret, my nurse called and told me the beta was negative. It was pretty realistic, but then I also recalled I was with Sydney Bristow at the time, and we were all dressed up in a hotel in an unspecified foreign country guarding one of the four exits and looking for Mike Myers. And handing out insulin syringes. (Sydney Bristow is Jennifer Gardner's character on Alias, a spy show on ABC. I'm fairly addicted). So this probably means nothing, except I'm worried that my beta will be negative.

Of course, if my beta is positive, I will immediately do the happy dance, celebrate my 4th wedding anniversary with my husband on the 2nd, and pray the 2nd beta shows appropriate doubling. Just another hurdle... Thanks in advance for all your luck and well wishes. Que sera, sera.

Wednesday, July 27, 2005

Heigh Ho, Heigh Ho...

Yes, it's back to work I go. I didn't stay off my feet as much as I wanted to, but I was mostly on bed rest. My aunt C flew out from the Southwest arriving on Saturday morning (day of transfer), for the main purpose of comforting my cousin A. It seems that A developed hyperstim syndrome, was terribly bloated/retaining water and was dehydrated at the same time. She was achy and nauseated, and we felt terrible, obviously. The doctors told A she had peaked on Saturday, and she's still recovering, and at least she's now starting to see some progress. We had cancelled her flight, and we're waiting to see how her screening goes tomorrow before we re-book the flight. We hope she can go home soon, as I know she has to be back at school in the beginning of August (she's managing the soccer team this year, and needs to get everything organized prior to the start of semester). C flew back yesterday, and we already miss her terribly. She's a wonderful mom, and she's even a mom to me; I know who I'll be calling for advice.

I feel fine, annoyingly so. I wish there were some symptoms, or some kind of sign, but I feel like I do any other day. Occasionally I'll have nausea so mild it's hardly worth mentioning, but that's it. Monday they checked my progesterone levels, which were apparently "great. Keep doing what you're doing." Which means 1cc in each cheek, although after reading Suz's post:
  • I want my, I want my PIO
  • I'll take the shots, thank you very much. I already have to insert 2 tabs of estrace in my special place twice a day, and if I don't want periwinkle blue stuff on my undies, I wear a lovely pantiliner. [If anyone can offer advice to do better active links, I'd really welcome it].

    So I go for my beta on 8/1, the day before our 4 year wedding anniversary. I'm hoping and praying I have better results than I did for my last beta, which was the day before Mother's day. We want this to work so badly, and I know DH would be such a great dad - he's really looking forward to it. I'm so looking forward to being a mom as well. A little anxious, but I know that will pass. Not even going to go for the pee stick - it's so early, and I just don't need that kind of agita.

    I feel fine, normal, like I do on any other day. I hope that will change, in a good way, of course. Ooooh, I am feeling a little dizzy, but I'm sure it's nothing.

    Saturday, July 23, 2005

    Cousin, Can You Spare An Egg?

    When we first started the whole Baby Quest, my two cousins, (my favorite Aunt's daughters) volunteered to donate their eggs. We told them we hoped it wouldn't come to that but we'd keep it in mind. In fact, over the years I have had several friend offer to donate their eggs, which is just incredibly touching.

    As our IVF cycles progressed, or rather came to abrupt halts, we started thinking more and more about my cousins' offers. My dear friends at this point were passed the age for donation and my cousins are in their early twenties. After our last cycle, we started making arrangements with my cousin A to figure what needed to be done. We knew the clinic had available schedules in July, and that A would be in summer school until the end of June. Her fall semester would start in mid August - so July it would be.

    We had to go and meet with a social worker to discuss this option, who asked us all kinds of invasive questions "How do you think you would feel if you saw your kids and your cousins kids playing together? ....Happy? Why on earth wouldn't I be happy? All kinds of asshat questions. We talked with the ovum donor nurse, who was very pleasant and told us what kind of screening would be necessary for all three of us. DH had his blood work that day, and we would need to fly A in from Texas to come in for a day o' screening. Of course before that, she had to have her day 3's done at an RE's office local to her (thankfully there was one in her town). When she got her course schedule on June 1st, she checked with professor to find out what, if any days she could miss. On that advice, we flew her up for a day in mid June for the fabulous Day o' Screening. Upon the physical and psychological, results we would know if A was an acceptable donor. For anonymous donors, they want to see 12 follicles for a baseline count. For known donors they'll accept 8. A, who is 22 and in school on a Soccer scholarship, had 20. In each ovary. Yeah, that's pretty mind reeling. The most I ever had was 13, but I m also 34. Physically she was fine, and as the psychological exam tests for depression, bipolar disorder and schizophrenia, we started to make plans for A's trip in July. My therapist asked "How are you dealing with things kind of dragging?" Just great, as they didn't feel like they were dragging at all! Everything was just moving right along. And on a very positive note, I asked the Big Guy if there was anything they could do to help with this cycle (when the biopsied cells were thawed, he told me not to worry about money - they would do whatever they could to make sure things worked out for me). To my utter disbelief, he told me they would waive their fees (about $14,000. for known donor cycle); I would still be responsible for medications and outside lab costs (about $6,500.). I cried and told him how grateful we were for their help. What a relief - thank God. Now we could get the ball rolling.

    We booked a flight for A to arrive on Thursday, July 7th and stay until the 30th. We were really looking to spending some time with her because she's just a really cool girl. When she graduates in December, she'll continue with Physical Therapy school. So. She's smart, pretty, athletic and in incredible shape. We really couldn't believe our luck that she was willing to do this for us. And while she was staying with us, we could get to know her a bit better, too.

    I started my Lupon on 6/27. Her meds would start on the 9th. Like I said, moving right along... On her first screening, she had 20 follicles in one ovary and 21 in the other. That would be 41, people. Jeez Louise. But I tend not to count my chickens until they hatch, so, one day at a time. Her meds, Bravelle, cost an ungodly amount of money. My insurance covered mine, but of course they wouldn't cover her. All for a good cause. All the money we've spent is an investment. Which we do know, but as I am a horrendous tightwad, it helps if I remind myself every so often. My lining progressed nicely, and was responding extremely well. So well they had to back her off some of her meds. They told us we could expect the retrieval between the 19th and 22nd of July. They actually wound up doing the retrieval on Monday, July 18th. That was quick! They were able to retrieve 25 eggs. Wow. The following day they called to tell us 10 had fertilized. The nice thing about this amount was that it wouldn't be decreased by the number that were affected or carriers.

    So we went in on Saturday, July 23 for a day 5 transfer. We were told we had two average blasts for transfer, with six more still developing. If they do okay, then they'll be frozen. My lining was "perfect" (it should be - I'm on 2 cc's of progesterone each night, and that's one in each cheek, for those of you counting). This will be my last post for a few days, as I'm putting myself on bed rest (which dh is reinforcing). We want this to work so badly, but fact is, want or hope or prayer have nothing to do with it. If this is in the plan for us, it will happen. If it's not, then it won't. I just wish I knew one way or the other so I could accept it. I guess that's what faith is about. I still hope this works.

    Friday, July 22, 2005

    And Then There Was One

    I had asked the nurse about the quality of the two embryos that would be transplanted. After checking with the lab director, this is what she found out:

    "One is unaffected, one is a carrier. I can only see the embryology info on one of them in the fields I'm permitted to view, but it looks good. Do you want to know the sex of the embryos?"

    After performing the moves you see cartoon characters make after they are hit over the head by impossibly large wooden mallets, I read the e-mail again and again, focusing on one word: "carrier."

    Apparently, just so's y'all know, a carrier is considered an acceptable embryo to transfer, because they won't actually have the disease, they'll just be a carrier of the disease. Like me. However, a small percentage (15%) may develop symptoms in their lifetime. Like my Mom. And Grandmother. So at the very least, having a daughter who is a carrier means they would have to go through this agita to try to have a healthy child.

    Okay. How about,

    The unaffected embryo, by the way, was a girl which we wanted to know but really - the gender just didn't matter - as long as it's healthy. After speaking with the nurse, the Big Guy and the brilliant geneticist, we opted to transfer the one, single embryo we knew was unaffected. We knew our chances wouldn't be as great, but if we wanted to have a child that was a carrier or affected, we wouldn't be spending oodles of money that we don't have (thank you credit cards)! We would have sex like regular people! Hell - we would have had Ben!

    Being the responsible individuals we are, however, we did not want to afflict another generation with this disease. So it was just the one, then.
    The transfer was on April 28, 2005. I stayed on self imposed bed rest for three days to try to get our little girl embryo to stick. I felt a little crampy, which I wasn't worried about - I felt that way with Ben. On the 5th dpt, I noticed my nipples were really sore - Oooh! Good sign! I got a bit of a fever and felt washed out, which my Aunt assured me was probably a good sign; sometimes, women early in their pregnancy get cold or flu like symptoms. We were positive and convinced this was working. There was no way I couldn't be pregnant! DH kept feeding me inordinate amounts of food, despite my protests that I was indeed not eating for two; the second was just a bunch of cells at this point!

    I told DH I'd like tulips for Mother's day. May 7th, the day before mother's day, I went for my beta. On the way home we stopped at a British cozy spot for some breakfast. There was a crafts fair going on on the town so we wandered around and talked about future baby things; it was recklessly optimistic. When we got home, there was a message on the machine from the clinic.

    "Unfortunately, I don't have good news, your test was negative..."

    My jaw dropped. I would have bet my house I was pregnant. I knew I was. Clearly, I was wrong. Again. Rain check on those tulips, love.

    So that was it. Our last cycle. We went through three fresh and one frozen. As we were out of frozen embryos, we were done.
    I talked to my Aunt, who called my cousin. Bless her heart, my cousin "A" asked, "When do they need me to be there?" My jaw dropped again.

    Thursday, July 21, 2005

    Can Open, Cells Thawed...

    That's right, first shot of lupron on February 14th. It was a pretty smooth cycle, except my Left ovary just didn't get with the picture. One of the doctors (the only one I don't like there - let's call him Dr. Ass, shall we?) asked me:

    "Have you had surgery on the left ovary?"

    me: "No"

    Dr. A: "There's nothing going on. It's looks dead."

    me: "It's not dead, it's just on vacation this cycle."

    Dr. A: "Hmmph."

    All the warmth, compassion and bedside manner of a frickin' ice pop. Thanks, ass. Aside from that, we wound up with 8 eggs, which didn't seem like a tremendous amount, but I was just glad to get some. Now we would wait to see how many of those were mature and of those, how many would fertilize. It turned out there were five. Including the two we had on ice, that made seven. See? I can add! At least small sums, otherwise I need to break out the calculator I keep with me at all times. ; )

    On Day 3 they were able to biopsy all seven (yay!) so we sat tight and waited for our call on Friday, March 11th (which was day 5) to find out if there were any that would be unaffected and healthy enough to transfer.

    The call came at about 11:00 a.m from Dr. S - the Big Guy who head the facility and is as nice and tactful as he is brilliant. In the kindest way possible, he let us know that the shipping container which held the biopsied specimens had been damaged during transport and the cells had thawed. Which means they couldn't be tested. Apparently, this had NEVER happened before. That's right, cheeky girls - I had the distinct privilege of being the first. And hopefully only. The upshot was that they could be rebiopsied, but by the time the results came back the window for implantation would have passed.

    On Monday, day 8, 4 of the 7 were able to be biopsied, then were frozen. Because the PGD lab scrapped the old test, they had to design the new one and that would take some time, so we just played the waiting game and climbed the walls to take our mind off the waiting.

    Waiting, and waiting, and waiting. Naturally I was growing more and more anxious - I finally e-mailed the doctor to see if they had anything yet. He called me in the evening of March 30th to tell me we had two to implant. No WAY!!! We were ecstatic that there were actually two healthy embryos we could transfer. We couldn't believe it. We were all set to start lupron on April 3rd. And then I got some further interesting news...

    Wednesday, July 20, 2005

    Sometimes, 13 is a Scary Number

    We geared up for our next IVF cycle in November; at least this time we got to use the Follistim pen, which was an absolute joy compared to mixing the powders. I was also on Lupron & lo dose hCG - thankfully this time I had different insurance which actually covered the meds - hallelujah! I was in full swing of the Lupron during Thanksgiving. My in laws were staying in a run down apartment around the corner until their new house was completed. We invited them over for turkey day; I just couldn't see them spending Thanksgiving at Uncle Juniors (on the Sopranos, his house is covered in wood paneling, as was this very run down little cracker box). My MIL came over early to help with the turkey, although it wound up being just her & DH. My fuse was non existent and this really set me off; I was terribly waspish with her. However, being that's she's emotionally unstable, I told her that I would clean and if she would continue helping DH with the turkey, that would be just great. So I cleaned & fumed. I spoke with my DH when she left, and we came to the conclusion - damned lupron! I'm usually much more easy going. Really! And the lesson I learned was, when inviting my in laws over for anything, to tell them to be there at a certain time - not earlier, as DH & I would handle all the food preparation. Normally, my MIL is very sweet, but God bless her heart, she does meddle something fierce. We're all trying to working on it without sending her into a temper tantrum.

    Anyhoo, our cycle went (mostly) great - my left ovary decided to pitch in and help so we were off to a great start! Then my lining looked a little thin and one of the doctors told me if it didn't get better, we'd have to cancel the cycle. So I was a slight wreck about that. The following day it looked great, so full steam ahead. When they performed the retrieval, the magic number was 13: a baker's dozen, my kind doctor announced. We were so excited - this was looking good! We were on tenterhooks the next day waiting to find out how many fertilized. It seemed that my stomach leapt into my throat every time the phone rang, but no RE. I stepped out to get the mail. Upon my arrival, DH told me the nurse called: 3 fertilized. I felt like I'd been kicked in the stomach. "What do you mean, only three fertilized?!" I called the nurse to find out the details. Apparently there were 4 mature eggs, the rest were either immature or post mature. Very odd, but there you are. As three was not a good number to start with, we decided to hold off on the biopsy and PGD. We'd go through another cycle and get some more eggs. Because, you know, it's just that simple. We had been lulled into a false sense of security with the smoothness and (almost) success of our first cycle. We were now becoming aware of just how many hurdles there were in IFV. Bye bye naivete! Hellooooo, cautious optimism! They were able to freeze two of the three, so we looked to our calendar to plan our next cycle. Next Stop: Valentine's Day!

    Tuesday, July 19, 2005

    Tabula Rasa

    After Ben's death, my friend J was coming in to visit that weekend. I had told her two days before what was going on and was glad she was coming. She was a help to DH & I, and I cried so hard my eye lids became swollen. We all talked a lot and cried that weekend. On Monday we showed up for work like nothing had happened. (On the outside. On the inside, we were still so very raw).

    Soon we started to contemplate our next cycle. As least we knew I could carry, which was helpful. I mean, I'd never done it before, so how does one know unless one does? We started looking towards November for the next start date and planning accordingly. I couldn't wait to get pregnant again - maybe Ben would come back to us; we both hoped he would. (By this we mean his soul; we know that the individual Ben was and could have been is gone, never to return).

    This gave us a goal, something to look forward to. We also booked our long weekend trip to London with L & K for the end of October and we couldn't wait for our little getaway, either. I went back to the IVF place for day three blood work, and got a bit of a surprise in September: my hCG level was 51. I was on the pill (and using condoms), so we knew we couldn't be pregnant again. They performed an ultrasound and discovered some retained tissue with blood flow. It appeared that a part of the placenta remained, and still had blood flow. Well, that was a bit of a surprise! I spoke with my nurse to discuss our options, and called my OB for a hysteroscopy. He was able to take me in mid October, before our trip. I was also pleased to learn that the flight and ensuing trip would not affect me after the procedure. We scheduled the hysteroscopy, which had to be converted to a surgical suction. I had no idea - I was out, and apparently had a catheter and endotracheal intubation. It went smoothly and they were able to evacuate all remaining placental tissue. When I woke up I was told they were able to get everything out; now we could start with a clean slate. Literally!

    Friday, July 01, 2005

    Not for the Faint of Heart - part 2 of 2

    When stage one was over, DH & I cried and held each other after the staff left the room to give us some privacy. The doctor eventually came in and hugged both of us; we were then escorted to labor & delivery. The nurse assigned to us was a lovely, kind and sweet woman. That was helpful. My OB came, inserted tablets around my cervix and so it began. I would keep getting tablets every four hours.

    I stayed in bed, ate Jello, ice pops and drank tea. DH was in the room with me; we watched TV, talked, cried, read books and dozed as the cramps started to increase. In late afternoon, DH went outside to call the office (we had told them we were doing testing, then going out to dinner with friends that evening). Marie, my nurse, was seeing other patients. The sun was streaming though the blinds and I had an experience... I felt incredibly, unbelievably... the least alone I have ever felt in my life. I understood, clearly, that no one, ever, is alone. I don't know if it was Ben, I don't know if it was God, but I was grateful for the message. (Raised an Episcopalian, I am not religious, but certainly spiritual). In the midst of all of this horrendous experience, I felt joy and was glad to have reached this understanding. And yes, this was before the morphine.

    My water broke around 11:45 p.m. The contractions got worse and more intense; Ben eventually arrived shortly after 1 a.m. We were alone in the room because everyone was attending a patient who was having a complicated delivery. DH and I looked at him, and held him and cried. Shortly after the doctor and nursing staff came in and clamped and cut his tiny cord, cleaned him up and let us hold him for a while. He was so wee, but we could see he was already developing DH's nose. Eventually they took him away to do a more thorough job of cleaning him up. Later I found out they took pictures of him (polaroids and professional), made foot molds, dressed him in a tiny blue kimono and gave him a teddy bear. I was stunned they did all things things for babies born too early. Ours was not a miscarriage, but they treated all of us with dignity and that meant more than these poor words can describe. They brought him back and we spent more time with him, and said goodbye. It was so hard to see this little person who grew inside of me, who we talked to, who we killed (let's not mince words here), and met him only after his death.

    I still grieve every day, some days I cry. He will always be a part of our lives, forever. We will always love him. I just wish he hadn't been affected. If he had been okay, he would have been born around mid January this year and I would never have found time to create this blog. Friends and family would tell me constantly how much he looks like his dad.
    But I am writing this blog. And I pray that Ben's soul understands and forgives us. I also pray that I can one day forgive myself. One day. But not today.

    Not For the Faint of Heart, part 1 of 2

    On Thursday, August 5th, 2004, we made our appointment for the following day to induce labor. My understanding was that this could take anywhere from 12 to 36 hours. This was so overwhelming; I felt like someone had jammed their arm down my throat and clenched my stomach in their fist. DH was the same - devastated. And on top of all of this, we had to put on the face at work that all was fine. Nothing to see here, move right along, now. I managed to keep my wits about me enough to call my OB's office and make sure they got pre-authorization for the hospital visit. In fact, the receptionist at the doctor's office was surprised I thought of it. Hey, as a virgo, we're nothing if not practical.
    The rest of this post may be a bit graphic and sensitive for some of those reading. If you have an aversion to needles or are nauseated, or are currently pregnant, you should bypass the rest of this post. I realize that that will greatly reduce the number of my audience, but as this blog is a figurative exercise in therapy, I don't mind. I will be happy to alert you, dear reader, when the water is fine. The next paragraphs will be the hardest words I have ever typed.
    One other thing I remembered was a clause in our IVF financing: our contract would end with a live birth. This was financing we purchased (for $21,600.00) prior to beginning our cycles - for this discounted rate, we would receive 3 fresh and 3 frozen cycles. (PGD, ISCI, AH were not covered by this sum, and would have to be paid in full prior to each cycle start date. Thankfully, DH & I have good credit and a number of credit cards). If you're successful on the first try, you've over paid but are deliriously happy having had the child of your dreams. If all cycles fail, one may take comfort in the fact that less money was spent per cycle than if you paid for each cycle individually. So far, we had been through one cycle when we accidentally became pregnant with Ben.

    My (practical) concern was that when labor was induced, and Ben was born alive, that would render our contract null and void - we wouldn't get another chance to go through IVF to have an unaffected child. I e-mailed my OB to run this by him, and he replied that, yes, it is a possibility that the baby may be alive for a few minutes after birth. So we scheduled a potassium injection for first thing Friday morning. This means that through ultrasound guidance, they would insert a needle though my belly, into Ben, into his heart and inject the potassium. This would stop his heart from beating, causing fetal death. So this is how practical I had to be. I had to kill my affected 17 week little boy for the "greater good" and possibility (and hope) of one day having a child free of this accursed disease. I'm a mess as I'm typing this. This was the worst thing I've ever done, ever had to do. The only rationale I could cling to was that if we had Ben, one day he would start to display his symptoms. It would get progressively worse and we would watch our son die, painfully wasting away. In that position, I would do ANYTHING to prevent it - to take it back - to keep him from suffering. And that's what I was doing on August 6th.

    The doctor and nurses performing the termination were sensitive and sympathetic. I'm sure they hated to do this as much as I hated having it done. DH was with me the entire time. I insisted on watching, DH could not but held my hand and cried. I'm glad he didn't. I felt that if I were taking Ben's life so early, it was certainly the least I could do watch. I watched and I cried, and I vowed that none of my children (if I would be blessed enough to have them), would EVER have to go though this. I refused to pass this goddamned gene on. It would die with me. I watched my son die and swore to him that I would never make him or any child suffer. Not from this, not from ALD. If we could prevent it, by any means necessary we would. As God as my witness, I swore.