Wednesday, January 29, 2014

Quick pregnancy update

First off, I would like to apologize to anyone who interprets my blogging absence as a worrisome sign (which I completely understand). There is so much stuff I would like to write about (pregnancy related and otherwise), but there simply is not enough time in the day. Plus, I am still in a bit of a mental holding pattern/fog, so writing semi-coherent blog posts does not come easy at this time.

If there are any negative developments, I will be sure to update here right away - I would certainly be needing everyone's prayers! So for now, let's just assume that no news is good news. 

~~~~~~~~~



Today, I had another in-depth ultrasound at Dr. E's office (the MFM specialist). My last one was 2 weeks ago, but at that time, we were mostly just checking fluids to see if the amniopatch had been successful. At that time, I was only seen by the ultrasound tech, and did not have the usual follow-up consultation with Dr. E because he was out of town that week. My last ultrasound that included a complete anatomy scan, and a consult with the doc, was 4 weeks ago. This was shortly after finding out that Baby A had passed away. At that time, while Baby B was doing well, I was still leaking lots of amniotic fluid. It probably was the lowest point in the pregnancy - one twin lost, and the other baby having broken membranes. 

When Dr. E saw me today for the first consult since then, he was sincerely excited for the great progress we have seen in the last 4 weeks, as well as today. He called the amniopatch being successful a "miracle", and I would have to agree. Also, baby has plumped up nicely, going from being 20th percentile for weight four weeks ago, to today measuring 47th percentile for weight (about 1 lb 14 oz right now). His fluid levels were perfect, all organs are looking and working great, the broken membrane is fixed, and I am not showing any signs of going into labor prematurely. Dr. E said that looking at the ultrasound images, one would never guess the ordeal we have been through, because everything looks like a picture-perfect singleton pregnancy. He even said that if things keep up like this, and I go to term, he sees no reason for me not to be able to have a home birth. Coming from one of the most highly respected perinatologists in the country, this is pretty encouraging! I will continue to co-care with both the OB, as well as my midwife, in case baby comes early or there are any complications. 

I have to go back to Dr. E's office in 2 weeks to try and do the echocardiogram again, since baby was not being cooperative in that regard today, and stubbornly facing my back rather than facing out. It's an in-depth ultrasound they routinely perform with mo/di twin pregnancies, checking the exact condition of every heart vessel. After that, we should be able to space the highly specialized ultrasounds out to every four weeks.

This little boy is very active, something I am extremely grateful for. Even in the middle of the night, after yet another trip to the bathroom, he will give me a couple of reassuring nudges just to allow me to fall asleep again peacefully. I don't think I will truly be able to breathe a sigh of relief until baby is safe in my arms, but today's appointment did make me feel so much better. Thank you for your continued support and prayers. It really means the world to me!

Friday, January 17, 2014

What NOT to say (and what to say instead)

I think the vast majority of people, most of the time, really have the best intentions when they respond to a parent who has just experienced a loss, or whose child is facing major, even life-threatening medical hurdles. It is not an easy situation to automatically respond to in a helpful manner. What do you say? How do you express your sympathy gently and sincerely? Especially men may feel like just being sympathetic, and listening, is not enough - what can they do to "fix" or at least improve the situation?

Sometimes, in the transfer of sympathy from the heart to the mouth, something goes awry and we end up putting our foot in our mouth in a major way. Of course, an insensitive comment is, well, an insensitive comment, and that at a time when the recipient of it is least willing and able to deal with it.

Assuming you are trying to be an encouragement and a blessing rather than a source of more grief, here are just some things you should never say in this situation:

- It could be worse

Thank you for stating the obvious. I suppose any situation could always be worse. How would you feel if one of your children died tragically, and someone tried to console you by telling you that hey, all your kids could be dead, right? Yes, things could be worse - but that doesn't mean this situation isn't tragic in and of itself.

- You should be thankful

Being thankful, and grieving, are not mutually exclusive. In fact, if we truly are thankful for something, we will be sad about losing it to the extent to which it was dear to us. If my husband gives me a gift that I treasure and appreciate, and it is somehow lost or broken, I will feel that loss. How much more so the eternal soul of a child, God's greatest gift to us on this earth? To insinuate that a parent who grieves is failing to be thankful for other blessings in their lives is insulting. It is possible to grieve a loss, while fully realizing blessings in other areas, and even in the tragedy itself.

- I just *know* everything will be fine

Unless you are God, you really don't know, so please stop going around dispensing such false hopes. Especially, if it is followed by something like "because you are such an awesome Christian/parent/etc., because you eat healthy/exercise/etc., because [fill in the blank]." This adds a whole new layer of guilt - it implies that if things go wrong (and they very well might), it's because the parent somehow failed as a Christian/parent/in their diet/exercise/fill in the blank.

Job's friends basically told him the same thing - that bad things only happen to bad people. I completely understand why he called them "miserable comforters."

- Whatever happens, happens

If you want to come across as callous, and someone never to call on with prayer needs, this is the line for you. God's will can be greatly influenced through prayer. Whatever happens may not happen, since the Bible is clear to tell us that "the effectual fervent prayer of a righteous man availeth much."

And, my favorite this time around:

- So, you're not still trying to have a home birth, are you??!?

Birth? What birth are you talking about? You mean the one months and months down the road, after we clear dozens more life-threatening complications? I think if we make it that far, I wouldn't care if they had to take the baby out through my head. I am not thinking about birth, I am thinking about keeping the baby alive, today.

Maybe your clue could have been the fact that we have gone to medical extremes to save the life of our unborn children. So clearly, if and when necessary (which would be very rare), we are more than ready and willing to take whatever measures are available. Rest assured, nobody loves, and cares about, our children more than we do. Because of this, we will choose the safest route for birth, as we have with all of our children.

And whatever you say, please be sure to never say any of these:

- Well, you already have so many children

Like that means we somehow love them less as individuals - what's one more or less?

- You should start using birth control

In other words, if this child had never existed, you never would have had any problems to begin with. I will assume you are only willing to have children if you knew they would not cause you any pain, suffering, or other discomfort.

And, how naive of you to think that tragedy never strikes firstborn or only children.

- So, you really think this child is in Heaven now? 

I actually had a Christian ask me this after they found out about a miscarriage early in our marriage. If you fail to understand or believe this simple Bible truth, at least just keep your mouth shut. What comfort are your words to those hurting parents?

~~~~~~~~~~~~

I could go on, and I am sure my readers could add much more to the list from their own experiences, but I will leave it at that for now.

Instead, here are some things that would be appropriate to say in any situation. 

- I am so sorry.

- I will be praying for you.

- How are you doing?

- I have been thinking about you.

- Please let me know if there is anything I can do to help. 

- You will get through this, somehow, with God's help.

And then, there really isn't a need to say much else besides. The person you are talking to may feel comfortable in sharing more of their heart with you, or they may not, but by being sensitive you won't have made it onto their "not a safe person to talk to" list.


Wednesday, January 15, 2014

Great News!!

We saw the specialist in town again this morning for a high-level ultrasound. There was no leaked fluid visible in the uterus, outside the membranes. Rather, the membranes have sealed to the uterine wall, as they were supposed to have been all along. That, combined with the fact that I have had little to zero amniotic fluid leaking in about 10 days, means that the amniopatch procedure was successful, and the patch is, indeed, holding. My body has reabsorbed whatever fluid was still outside the membrane, which is infinitely less distressing than leaking it out!

This is great news!!! The patch being a success plays a huge part in my ability to go full term, which at this point is looking very promising. There are no signs of premature labor or infection. While Baby B's membrane will stay somewhat compromised for the rest of this pregnancy, I am optimistic that our chances of this being an uneventful pregnancy from here on out are excellent. We go back for another check-up and echocardiogram in 2 weeks, at which point they will also do the monthly in-depth growth measurements.

After today's appointment, I stopped at the hospital for a private tour of their NICU. Even though everything is going well, we are aware that the situation could still change dramatically at any time, and want to be prepared as best as we can. The nurse showing me around was very sweet, as all the nurses at this facility have been.

Many thanks to all of you who are praying. We are praising the Lord for blessing our little surviving baby with health and safety at this time.

Tuesday, January 14, 2014

Recent happenings

Our family is slowly getting back to "normal" life. Our Christmas this year was, of course, overshadowed by all the pregnancy complications, but the children hopefully didn't take much notice of that. I typically buy all their gifts throughout the year just because it saves money and evens out the cost. This year, I was extra glad I had finished up all the gift buying by fall, because that was one less thing to have to think about.

On Christmas Eve, the kids first had their own personal gift exchange in the boys' room. Back in September, we had drawn names, and each child was going to give a gift to only one sibling. Meaning a total of 6 gifts were exchanged between them all, rather than 30 if they had each given one gift to each sibling (Stephen was too young to participate this year). This was our first year doing this, and the kids were a bit skeptical, but I think it is definitely going to become the new tradition.






For the family, our tradition for several years now has been to open gifts on Christmas Eve in the evening. That way, the kids stay up later than usual playing, and then sleep in on Christmas Day, rather than waking us long before dawn, brimming with excitement. Plus, it's a great motivator - "We will open presents as soon as the house is clean and everyone is done with their chores!" Ha!
 
 Before the storm...



This little play store turned out the be the biggest hit with the girls and Stephen. They continue to play with it for hours each day. The play food, register, and grocery cart were previous gifts, but went along with this perfectly. It is set up in the girls' room now, next to their play kitchen, so they pretend to run a grocery store with a little built-in cafe.
  


Yes, our kids LOVE Playmobil. Like, a lot. I think it's great - they play with it for hours, even the older ones. Certainly beats video games in my book.

I spent New Year's Eve at home alone, while the rest of the crew went to our church's Watchnight Service. I just was not feeling well at all, physically or emotionally. It really was a very low point for me. At that point, we were still in shock from Baby A passing, and it looked like with Baby B's severely leaking membrane, we were going to lose him, too. Thankfully, things have been looking up since then. 

Our homeschool resumed last week, after Christmas break, and the children are doing well. Just this week, we have been able to add in all the extra-curricular classes they take: P.E., piano, and riding lessons (for Isaac only). For the latter two, we do not pay, but rather barter, which is extra work on my part I haven't been able to do, but now feel ready for. My husband is the one who takes all the kids to P.E. each week, even the ones that are too young to participate in the class. It really is wonderful to have a couple of hours at home all by myself, even if it is just spent catching up on housework.

With all the extra doctor's appointments, phone calls, paperwork and such, it has taken me until this week to get into my groove more. Thankfully, I upgraded our chore system while I was on bed rest, which is really working out well for us. I got the inspiration from an article in the most recent issue of Homeschool Enrichment Magazine, my favorite homeschool magazine on the market by far. If you are not a subscriber, I highly recommend it! I am hoping to share our new and improved chore system soon.

Pregnancy-wise, all seems to be going well. We see the specialist tomorrow, and with the amniopatch seemingly holding, are hoping to be released to being a low-risk pregnancy again. The surviving baby's amniotic membrane will remain compromised for the rest of this pregnancy, but with some basic precautions, that should not stop me from being able to go full-term. We are aware that things could turn ugly again at any moment, and are preparing accordingly, but are enjoying being able to catch our breaths a little bit at this time. I have been able to find an OB who supports natural birth, at a hospital with a level III NICU. When I toured the hospital, the nurse took me aside afterwards to tell me that since I had already had seven natural births, their nurses would treat me differently than a first-time mom, and give me whatever freedom from their "rules" that I needed, as long as my doctor was okay with that. 

The issue I had mentioned with the hospital bill in L.A. has been completely resolved. We will only be paying for the original estimated amounts ($13k for the first surgery, $9.5k for the second), not the much higher amounts that only apply if billed to insurance. So in all, our out-of-pocket medical expenses for both surgeries and all appointments with doctors and specialists in town are in the neighborhood of $35k, which is a huge chunk, but at least not impossible. We are very thankful to all who have donated any amount and helped us with this unexpected financial burden. We are equally thankful to those who have remembered us in their prayers, and ask that you please continue to do so.

Since my energy levels are still dragging from time to time, and I am supposed to be taking it easy to prevent  premature labor, I have been spending extra time at the sewing machine. I have finally made several new pajama pants for my poor, freezing sons (you know, because the house goes down to 70 degrees at night...), and also finally managed to finish a quilt I started for my husband a couple of months ago. It was supposed to be a Christmas gift, but at that time I was unable to sit at the machine and sew. Because of being pregnant, I am a light sleeper, and he often ends up in our guest bed so as to not disturb me. This quilt, while light-weight, is still warm. The batting is 100% wool, and the backing a warm flannel.



I may be signing up for another quilting or cake decorating class in the coming months. They are a blessing to be because in addition to learning a new skill, it takes me out of the house in the evening, which is the hardest time of the day for me at this point. The kids are their wildest and neediest, the house is a disaster, and I start breaking down emotionally and just want to be alone in peace and quiet somewhere, praying for the baby that is still alive, and thinking about the one that has passed on. My husband, who is generally awesome and loving, but has been especially so during this time, is happy to play my part at home while I go and enjoy a couple of hours at a craft class, and then come home to a clean house and sleeping children. If you have been thinking about trying craft classes at Jo-Ann's, I highly recommend you do so. This week, all their class fees are half off (at least in our area), so this is the perfect time to sign up.

Also last week, my cousin from Germany who visited with his family this summer was back in town by himself for a few days on business. We were glad to have him be able to spend some time with us. And as if that was not enough, he loaded us up with some wonderful German chocolates, and my favorite "muesli", though it's really not a health food but rather a dessert. Trader Joe's, who is owned by a German company, used to sell their own version here in their US stores, but discontinued it several years ago and I had not had any since then. I am very carefully guarding the muesli my cousin brought over, enjoying a little here and there as a special treat.




 My cousin handing out Kinder [beep] - it doesn't get much better than that!! Yes, in the land of GMOs  and Twinkies, certain chocolates are banned because they are hollow and contain small toys, a terribly dangerous choking hazard (all the warnings on the package notwithstanding). Thankfully, my kids made short end of the contraband, and no traces of evidence are left. Whew!

Speaking of chocolate muesli, I have been making chocolate granola for our family this last month, and love it. You can find the recipe here - I follow it to a T, with no changes, and it's a huge hit with everyone. It's especially good with a banana sliced into it!!

That's all for now. Thank you for following our story, and keeping us in your prayers.

Thursday, January 9, 2014

Some good news

First the good news:

- I have had only very minimal leaking of amniotic fluid this whole week, making me hopeful that the amniopatch may be holding, after all. The amount I have leaked is much less than the fluid outside the membrane that still needs to drain off or be reabsorbed, so it seems like no new fluid has leaked out from Baby B's sac. We go back to see the specialist in town on Wednesday; we'll have to wait and see the results from that.

- Around the time that Baby A passed away, I was having a lot of nausea, as well as severe headaches, just from the major hormonal shift in my body, going from supporting two babies, to just one. But this week, I have been feeling very well physically, and my energy levels that have been in the dumps this entire pregnancy are actually higher than they usually are for me during pregnancy. I think my body has been working overtime from the very start, trying to support Baby A in spite of his compromised cord insertion and placental share. 

- I have decided on a hospital, and found a very nice OB supportive of natural birth that delivers there. She works with other ladies as her backups, but because both her office and her home are only minutes from the hospital, she makes it to most of her births. I saw her for the first time today, and was very happy with her, as well as all of her staff. 

- During today's visit, the OB did a quick ultrasound, and found Baby B's fluid level to be adequate, as well as both boys to be in head-down position. This is a relief to me, because up until now, they were both transverse, with Baby A on the bottom. Although their position can still change, I am happy to know it is possible for both of them to be in a good position for birth.

- Baby B is very active and moving much, which is a huge relief for me. Like most pregnant moms, I wake up often during the night for bathroom breaks, and never can fall back asleep until I feel a little nudge or kick. Baby has been very kind to be generous with his assurances in this regard.

Please continue to pray for the following: 

- That the amniopatch will hold, and there will be no more leaking besides what is already outside the membrane, and still needs to drain off.

- That Baby A's passing will not trigger premature labor. 

- That Baby B's sac will will not spontaneously rupture due to it already being compromised, that he would continue to have adequate fluid levels, and that he would not get an infection.

- That I get the financial issues with the hospital resolved - they originally quoted us $13k for the first surgery (that's just for the hospital, not the surgeon or the anesthesiologist). When the bill arrived, it was for over $33k. 

I didn't mention this yet, but when I went in for the laser surgery, the hospital was in the middle of renovating their OR. So the surgery was to take place in some other room that had temporarily been transformed into an OR, or maybe it was an old one they only use for backups, I'm not sure. In any case, it wasn't the room they usually use for their fetal surgeries. 

Start to finish, the laser surgery was supposed to take less than 1 hour. However, the staff first couldn't get the electronic equipment (cameras, screens, etc.) to work, or interface with one another. They finally gave up on that, and called the surgeon in. He had already administered the local anesthetic, and was counting down from 3 to let me know when he was going to put the tube into my stomach, through which he was going to insert the scope and laser. The tube was about the diameter of a thick pen/marker. Literally one second before he did, the entire power tower in the OR went out, cutting the power to his laser and scope. An overhead light stayed on, but that was about it. Had the doctor started only seconds earlier, he would have had to abort the surgery, which could not have been attempted a second time, and would have resulted in us losing both babies. 

Dr. C never lost his cool (admirable! It really made me feel much more confident at the time than I feel now just telling the story). He left the OR, and went hunting for the hospital's engineers. Evidently, some breaker had been tripped. Dr. C did not attempt the surgery again until he had two of the engineers sitting right outside the OR in front of some power switchboard, to make sure it wouldn't happen again. 

Because of all this, I was in the OR for over 3 hours. The additional charges on the itemized hospital bill almost exclusively stem from the fact that OR costs are calculated per minute after the first hour, as as the costs for anesthesia (I was getting intravenous sedatives). Plus, the staff had to scrub up twice, and I was prepped for surgery twice. 

I have been calling the lady in charge of our account at the hospital virtually every day, leaving her message after message, but she has yet to call me back. I am also writing up a letter to the head of their business office, disputing the additional charges. Please pray that all this resolves quickly, and with minimal effort on my part - it really is an unnecessary drain on me right now.

- Please pray for my emotional struggles. I do fine throughout most of the day, what with all the busyness and distractions, but nights are very difficult for me - especially after days like today, when I see both babies on the ultrasound. I really do not know what to expect as far as Baby A's condition at birth, so it's hard to prepare for that. I also am still very grieved about the loss, and just long to have him back. God is gracious to have allowed us to come this far, and for one baby to still be alive, and I know our little twin is much better off now than he was before - but the selfish part of me just wants to have him, hold him, and raise him. I am very thankful that if Baby B lives, we will have him as a carbon copy, so at least we will know what the other baby would have looked, and maybe even acted like. But yes, I am still very sad all the same.

- Please just generally remember us in your prayers. This pregnancy is going to remain a rollercoaster, and while things are looking up at this moment, that can literally change anytime from one second to the next.

~~~

That's all I can think of for now. Many, many thanks for the prayers, support, and words of encouragement. I have one final praise report: I received a new tablet as a gift this week from a dear family in our church! So hopefully between the craziness of juggling appointments, making phone calls, disputing bills, trying to get all my medical records in one place, and just keeping up with the day-to-day routine of our large family, I may actually get back to updating the blog more than once per week! :)

Thursday, January 2, 2014

21 week 5 day pregnancy update

Well, in the week since the last ultrasound and my most recent blog post, I have been leaking amniotic fluid like crazy - way more than what could have been left outside the membrane, and still needing to drain off, so I was already expecting to find out that the patch must have failed.

At our appointment today, Baby B was doing well, though his fluid level in his sac has dropped due to the leaking (but is still within safe parameters). He was measuring right on target size-wise, had a good heart beat and blood flow, full bladder and healthy kidneys (which means he has enough fluid), etc. Sadly, however, the u/s also confirmed that Baby B's membrane is still ruptured. It is not clear if the patch held for a while, and then failed, or never really took in the first place. In any case, the patch was unsuccessful.

There is not much else we can do at this point. Dr Chmait told me that doing the patch a second time has never been successful, so it probably would be pointless to go back to L.A. a third time and try that. It is possible to keep carrying Baby B, but there is the obvious risk of infection, preterm labor, complete rupture of the membranes (as opposed to my "high leak"), etc.

I am on modified bedrest, and was told to lie down each day from 10 to noon and from 3-5 pm. No driving, no strenuous chores, etc. Just standing, walking and sitting the rest of the time. I leak more when I am lying down, so I think that's why they don't want me to just be on complete bed rest. However, being up and even moderately active ups my chances of a complete rupture of membranes, and/or premature labor, so it's a bit of a catch 22.

While I theoretically could go to full term, it is very unlikely to happen with my compromised membranes. Dr. Chmait thinks most likely I would have the baby sometime around 30 weeks, based on previous experience with moms in my situation.

I am going back for another ultrasound in 2 weeks, at which point I will almost be to what is considered "viability" - 24 weeks. At that time, I will also receive a steroid shot to mature baby's lungs, in case my body goes into labor prematurely. Of course, giving birth that early would be extremely dangerous to baby's survival and health. I am really aiming and praying for 26 or 28 weeks as a bare minimum. My membranes ruptured at 18w 5d, so already 3 weeks ago. There really is no hard and fast rule to how long this pregnancy could go on. The things we are watching for are (a) making sure baby has enough fluid left in his sac, (b) preventing premature labor due to the compromised membranes and leaking, and (c) preventing infection.

My MFM in town, Dr. Elliott, is very supportive and hopeful about the idea of me still having a home birth, but obviously that's not an option if baby is premature, or if there are any other complications. He seems to be more optimistic than Dr. Chmait about me carrying this pregnancy at least somewhat close to term, but then, Dr. Chmait sees more cases like mine. So between now and reaching viability, I will need to find a hospital with an excellent NICU, as close to the house as possible, as well as an OB that works there to deliver me in case that becomes necessary (which is very likely). 

There is a chance that as baby continues growing, he could eventually stop the leak by forcing the broken membranes against the uterine wall, but I'm not counting on that. Seems like at every turn in this pregnancy, we have consistently drawn the "short stick" on all the possible risks and complications. So I am not holding my breath on that happening. 

In other news, I have health insurance as of yesterday, so that should ease the financial burden somewhat going forward. We picked names for the boys weeks ago, but have not yet shared them publicly. For some reason, that just seems too delicate at this point. The other kids have been on Christmas break from their school work, which we used to catch up on any gaps from the craziness of the last two months. Going forward, me being stuck on a sofa should actually be very helpful for their staying on track. My awesome mother-in-law, who has been here for a full month helping and making it possible for my husband to take me to L.A. as well as local appointments, left today. My husband and older kids will be doing my work around the house whenever I am down, as well as anything remotely strenuous, any errands, etc. Plus, my MIL is available and willing to come back at a moment's notice should it become necessary, and for sure when baby is born.

Thank you all so much for your continued prayers, support, gifts sent to the house, etc. I wish I could post here more often, or respond to all comments and emails, but sitting up at a desk typing is actually very strenuous on my stomach. Though I certainly love getting and reading emails, which I can do from my phone even while lying down. During the times that I feel comfortable sitting up, I try to get caught up on all the thank-you cards that I need to be sending out. I apologize to all who have not yet received one from me. Please know that we are very thankful for, and humbled by, the outpouring of love and support we have received from so many. I am working hard on trying to make sure to get a personal note out to everyone within a reasonable time frame (barring any more serious complications that would take all my time and attention, of course).

Please continue to pray for the following:

- That I would be able to carry the baby to term, or as close to it as possible.
- That baby would continue to grow and thrive, and have enough fluid left to do so.
- That if baby is born prematurely, he would live and be well.
- That I would find a supportive OB.
- That I would have peace about continuing to leak - it is so incredibly unnerving to me! Even though it has been going on for weeks now, there is nothing like waking up in the middle of the night for the third time, having soaked through a maternity pad.
- That I would have peace about this pregnancy, period. Which seems like a really tall order. I don't think I will be able to exhale until this is all over, at which point I will probably suffer some serious PTSD.
- That the membrane would heal/seal of its own, or that at least the leaking would slow down again considerably. 
- That baby would be safe from infection. 
- That our family would grow and be strengthened as a result of this trying time, and that we would find a "new normal" we can all be happy with for the time being. 

If you have any advice or resources to share, please feel free to do so in the comments.