Reclaiming Ava

I'm sure I don't have to go on about how happy I am that Ava is home. I feel like a new mom again, finally. It's such a weird feeling to have your baby in the NICU and only get to spend a certain amount of time with her. Sure, you get to participate, but really it's the nurses that call the shots. I wouldn't say it's harder for a parent to already have a child that had a normal delivery, but in some ways you know what you are missing. I missed having her in my hospital room while we were both recovering from the traumatic experience of delivery. I missed that photo opportunity where Sophia comes to visit and gets to take a picture on the hospital bed snuggled up to her mom and new sister. I can go on about all that I missed, but one thing I did get--although delayed--was the wheelchair escort out to our car the day we brought her home. I don't know why this is such a big deal. The first time I saw a baby from the NICU go home and found out that the mom got the wheelchair ride out to the parking lot like all the other normal moms that get to take their baby home after a brief hospital stay, I got excited that I would have that experience. But that first time seeing those parents take their baby home from the NICU was rough for me. Each time got a little better. Each time I knew we were also closer to the door. When that day came, I was really overwhelmed with emotion. I could finally cry. I could let go.


So here we are. Ava is home. I thought I'd be freaked out not having the monitors tell me everything that was going on with her. But in reality, it's nice to have my instincts start to take over again. The first day of her home was filled with some doubt that I could really handle it. After her first few bottle feedings, I started feeling more confident in my ability. I had joked with the nurse when she took off the monitors and cut the hospital security bracelet off Ava that she initialized the "cry baby" feature because all of a sudden Ava started to cry. But it was really no joke. Ava cried the whole night through her first night home. But why wouldn't she? She went from a place that was always 75 degrees and 24/7 filled with lights and activity to a place that was lucky to get up to 68 degrees and the lights went off at night and the only noise heard was Rick and the dog taking turns snoring. So we got through the first night, and the next night got better. And Ava stopped feeling so foreign and more permanent in my arms. And she had her first bath to finally wash off any last bit of hospital smell. So here we are. Ava is home and she is ours for good.

Ava came home today

Our "rent to own" baby is finally ours to take home! After lots of paperwork and lots of instructions, we left the NICU at 10:30 AM. More details later, but for now I'll just leave you with a picture of her.

Notice anything different?!?

Her feeding tube is out! Apparently I had to write about my frustration in order to turn that corner. Doesn't she look happy? I sure am. So now she's onto the next stage of feeding where she's ad lib, meaning that she determines when she wants to eat and how much she wants to eat. You know, like a real baby does. The nurses told me they heard a rumor that she may be coming home before Christmas. Keep your fingers crossed!

Ready, set...stall

No matter how many times a nurse has told me that the most frustrating part of the whole NICU experience will be waiting for Ava to get the feeding down, I brushed it off. Until now. Because here we are. And it's a painfully slow process. And I'm frustrated. The great news is that Ava is now 5 pounds and 13 ounces. She is obviously gaining weight. However, they have a system in place to teach premature babies how to breathe, suck and swallow at the same time. This comes naturally for full term babies, but not preemies.
Everything started out great, but during the week it seemed like Ava said enough was enough, and she tired out. It could also be that last week we seemed to have a lot going on in her world. She had her last heart echo, which showed that everything is functioning perfectly. She had her vaccines the next day, and usually that makes babies tired. And then she had her head ultrasound the following day, which showed no brain bleeds or cysts. All in all, very good progress and very good results. But it probably made her tired. And she needs energy to be able to take a bottle or to nurse. So while we were told that she may be able to come home for Christmas, she won't if she can't take at least 75% of all her bottle feedings in a 24 hour period. If they have to hook her up to the gavage feeding for the rest, the clock is reset and we start the whole process over. She's made it through 5 straight feedings without the need to gavage, but those last 3 feedings have been challenging. We've all given her pep talks, but I'm afraid it's going to happen on her own time. Until then, we are in a holding pattern.

Overachievers

Ava took half a bottle yesterday! Last week I met with a speech therapist to discuss transition from gavage feeding (feeding tube through her nose and to her stomach) to nipple feeding (nursing and bottle). Why a speech therapist? Well they look at all the signs a baby is ready to feed herself, like rooting, sucking, waking up when she's hungry. Ava started doing this last week, so we had an initial test run. I was excited to see what she would do, and it was pretty anticlimactic when the therapist presented Ava with a bottle and she only sucked 4 times before the therapist took it out and told me she wanted to wait a few more days. Ava had the sucking down, just not the breathing during the sucking. So yesterday she tried again and Ava took 22 mL of milk, which is half her feeding. She's really young to do this, and everyone was impressed. The goal is to get her to complete a whole feeding by bottle, and then they will increase her bottles until she is completely bottle fed. It could take awhile to do this, but this is a big step for her and one step closer to going home.

She's really changed in appearance the last few days. Now that she's 4 pounds and 10 ounces, she looks like a real baby. She's also doing super cute baby things instead of super scary preemie things.

My other overachiever, Sophia, is into the "let me do it myself" stage. She does everything really well all by herself, I might add. It's incredibly frustrating when I'd like her to do certain things within a time frame. But with Sophia, it's on her own time. She's stubborn. Boy is she stubborn. And you know what? So am I and so is Rick. And Sophia is super smart, too smart for her own good. She has a memory like an elephant. I can't believe she's only 2.5 years old and remembers the coffee mugs from last Christmas. She knew there was a picture inside each coffee mug and asked to look at them before I washed them. That's just one of many examples. Lately, to get her to go to bed, I've been telling her what she can look forward to when she wakes up the next morning. And when she wakes up, the first thing out of her mouth is a reminder of what I've promised her. Nothing gets past her.

It's been a challenge to juggle time with Sophia and time at the NICU with Ava. I feel like I never get enough time with them and am not doing a great job with either. I have to remind myself that it's only temporary and that Ava will be home soon. And then it'll be a feeling of guilt that every normal mother feels about dividing their time between the newborn's needs and the other child. I just hope during this whole process I don't completely screw up with Sophia.

Ava's 1 month birthday

It's been one month since Ava was born. She now weighs 4 pounds and 2 ounces. I helped the nurse move her from her incubator to a bassinet on Thanksgiving, so she's now in a big girl bed. It's exciting to think that the next bed she moves to will be her own at home.

She also got a big girl bath the other day. It was a little stressful for me, because she's so slippery! But with the help of her nurse, we figured it out.

Giving thanks

I have a lot to be thankful for this Thanksgiving. My mom has been dealing with some health issues that has kept her from being here to meet Ava. Yesterday she was well enough to finally have surgery, and we are relieved that she didn't need a colon bag. I anticipate a speedy recovery so that she can get her butt down here to help out when Ava comes home.

I am thankful that Ava is doing remarkably well. As much as it grates on my nerves when people say it could have been worse, it's true. It could have been much worse. We could not have Ava, we could not have had such a smooth ride to where we are at now with her growth and health.

I am thankful that, with the support of family and friends, we've been able to all hold it together and to manage a routine. I will be really thankful when everything is back to "normal" again, but today I am just thankful that everything is looking up.

Ava's fourth week

Well, Ava's almost 4 weeks old anyway, but I was anxious to update on her progress. She's off her cannula. I am very excited about this for many reasons, but mostly because it just seemed uncomfortable and always hanging out of her nose anyway. They did a trial run yesterday to see if she would be able to handle it and she did well all day and through the night. Now you can see more of her cute face. I'll have to update with current pictures soon. She's also holding her own temperature which means that the lid to the incubator is open all the time so I can go in and hold her without having to make a big ordeal about getting the lid open and the monitors reset. She is also able to wear a onesie now and I was excited to be able to bring in her own clothes to give her some personality. Another big thing was that I was able to attempt to nurse her. They call it "recreational feeding" which cracks me up. I didn't have high hopes she'd do anything when presented with the recreation, but that girl surprised me. Today was her third time, and she latched on and sucked like a pro--for about 3 second intervals--and it's a huge step in the right direction but she needs to be able to get it all coordinated and that's going to take a while. With all this progress I'm eager to get her home. It's still a long way off, but I'm hoping she'll be able to come home sooner that her due date of January 19. We are so proud of our little peanut!

Ava's third week

While last week seemed like everything was progressing quickly, this week it seemed like things slowed down a bit. I have to stop and remind myself that Ava is only supposed to be 30 weeks now. She's still doing well with her feedings and her weight gain is on track. Her nasal cannula is down to 1/2, which is barely anything but she still needs that little bit as a crutch because without it she gets a little stressed. I was hoping the cannula would be off by now because it's kind of a pain. She likes to pull it out, and half the time it's not doing anything. The only time she's been having some issues has been during feedings, so they think she might have a little reflux, and they increased her gavage feeding from 1/2 an hour to an hour. That seems to have helped out.

Sundays are sibling visit days, and Sophia missed last Sunday because she had caught a cold. So yesterday she was able to spend some time with Ava. I think Ava recognizes Sophia's voice because as soon as Sophia started talking, Ava looked and moved in the direction of Sophia's voice, and she really showed interest in her, more so than she's shown in me, really. Sophia was really gentle with her and kept saying, "Aww she's so cute." I sure hope that attitude continues on! Of course I forgot my camera, but the nurse said they have a digital one on hand so she took a quick snapshot.

Ava's second week

Ava is starting to look like a real baby! She's taken on the newborn appearance rather than the drowned rat look that she's been styling since around the second day she was born. I hope to update with pictures soon, to show her off a little. She continues to tolerate her feedings well, so they keep bumping up her intake by 1 mL each shift change (translation- she's getting more milk and less IV stuff). The Dr. told me he thinks they will take out the IV feeding completely tomorrow. Her nasal cannula has been turned down to 1, and she's been good with that (translation- she's almost completely helping herself to the room air, no need for some tube to help flow room air into her nose).

As I mentioned above, she's starting to look cute. Don't get me wrong, I absolutely love her and I'm completely bonded with her, but I just don't really think newborns are all that cute. And a preemie newborn is scary. But now her eyes aren't bugging out so much, she is starting to fill out those wrinkles, her skin is looking pinker. She ended up with my birthmark. I suppose that will be the only obvious trait my children inherit from me. Sophia's has faded much more than mine did, so I hope the same for Ava. Ava has her dad's upper lip and hair line. I'm sure more things will start to show as she grows and as more of the wires and stuff covering her are removed. We can't be happier with her progress.

I had my 2 week post-partum check-up today and the whole staff came over to ask how Ava was doing. My Peri said they call over to the NICU regularly to check in on her. They call her their miracle baby. It was very touching.

Halloween recap

I was determined to have a somewhat normal Halloween. Halloween is my favorite "holiday" and I made sure to decorate the house, carve pumpkins, and do some projects with Sophia. I think Sophia loves Halloween as much as I do, but her focus is on candy. The few weeks before Halloween, she recited the following, over and over: "I dress in costume, I knock and say 'trick-or-treat' and then I get candy--that's how it works."

In preparation for the big day, we went to the pumpkin patch...


We carved pumpkins...


We got spooky...


We got dressed up...
Sophia as Tinkerbell


Ava as a Bee


We met up with our friends to go trick-or-treating...


And we got lots of candy!

Ava's first week

Has it been one whole week already that Ava was born? I would have thought time would stand still but actually it's gone by so fast. Ava is an absolute Super Star in the NICU. I'll spare all the terminology used in there, I think they even have a term for all the NICU terminology, but drawing a blank for that word. Anyway, she's doing really well. I hate to admit it because I just don't want to jinx anything.

She's on very little oxygen now, still with the tiny tube in her nostrils. Her umbilical lines got swapped out with a PICC line in her leg (a deep IV that they can also use to draw blood from, as well as administer meds). They took her off the humidity. She's been on and off the light therapy, basically the tanning bed that helps her jaundice. Her skin is looking less "pumpkin" and more flesh-toned. And wow, you would not believe the size of her poop. She does her daddy proud there. They just increased her feedings to 4 feedings a day, 3 mL each feeding. It's slow progress, but she's maintaining her weight at 2 pounds, 13 ounces. The goal for this week and obviously from here on out is to get some fat on her.

Today when I went to visit, I met the Neonatologist taking over for another Neonatologist while she's on vacation. He gave me her stats and then he told me about increasing her food intake. He says, "I was told your milk supply is dismal and we'd really like to make sure she gets breast milk but we may have to supplement." Um, WHAAA??!? I have a full stock pile in my freezer that I've been told to keep until they can get rid of some of the current supply, buddy. Who's supply are you calling dismal? So apparently the on call nurse didn't look in the right place because I told her to look harder. Wouldn't you know she found it and told me they have enough to feed her for at least 3 weeks. I get raised hackles when telling me any food I supply is dismal, I take that as a personal insult. I'll try to let it go. But just in case they were unsure, I pumped right then and there and waved the 4 ounces of fresh milk in front of them to ask that they include it in their storage just in case. Ha. OK, moving on.

I've been able to hold Ava for an hour a day, kangaroo care style. She's still hooked up to all her wires during that time for heart rate, oxygen level, respiratory level, temperature, etc. and it's rewarding to see how stable she becomes on the monitor when I hold her. Today when the nurse handed her off to my chest, I could tell her head was in an uncomfortable position. I wondered if I should try to shift her, but with all those wires and things, it's pretty difficult to see if I've knocked anything out of place. But Ava took care if it. She lifted her head and repositioned herself. That's my strong girl.

I've been told she may be moved out of her little room inside a room inside a room to hang among the "common folk" soon. While we won't have as much privacy, it will be nice to have her graduate to less critical status.

So one week down, 10 or so weeks to go until we can think about bringing our little girl home.

Ava and Julia's birth story

If you have been following my preterm labor, it probably came to no surprise that Ava wanted out and she wanted out NOW. I had been taking medicine to try to calm the contractions and everything seemed to be going pretty well in that regard until that Saturday night. It could have also been that I was being stubborn about taking it easy, and decided to join Rick in taking Sophia to her first rodeo. We planned it out that he would drop us off at the entrance, we'd walk immediately to our seats, and then he'd pick us up at the entrance. But because I'm who I am, I wanted to find Sophia a cowgirl hat, wanted to get some food, wanted to let her watch the kids try to rope the fake bull on the hobby horse thing and watch the mechanical bull. So I probably overdid it. I had some pretty intense side pains that night.

On Sunday, I did nothing, until it was time to go over to the in-laws to celebrate my mother in-law and father in-law's 60th wedding anniversary. I wasn't feeling myself, contractions had started up again and I was uncomfortable. I had made a comment to Rick that we needed to find out who was "on call" just in case we needed to have someone come over and watch Sophia if we had to go to the hospital. But instead of my normal night of pacing the house--like the last 2 months of wakeful torture--I had a really good night sleep. This also alarmed me.

On Monday I had my scheduled Peri appointment. I mentioned the contractions, but by that time the NST showed that they were "uterine irritation" or something like that. Still frequent but not intense. Ava's heart rate was looking good on the monitor. I went in to have the ultrasound and we immediately noticed that Ava had started collecting fluid around her other organs. My Peri told me he'd need to discuss things with his associate Peri, which I took as a sign that I'd probably be sent directly to the hospital.

The associate Peri came (she's female and more adept at handling crazed patients--which I didn't need really, until right about then) and told me they wanted to take Ava out before more bad stuff could happen. Do you know my first thoughts? OK, I was terrified of course. But what came flying out of my mouth was "I should have had that cheese danish I'd been craving this morning" and second was "I should have had Mexican food for dinner the night before." If you've ever had a c-section, you know the importance of your last meal, because odds are you are going to be starving and they are only going to offer you ice chips for the first 24 hours following surgery. Mexican food, well also pretty important to have an uneventful bowel movement post major abdominal surgery for reasons I'm sure even people that have never experienced a c-section could appreciate.

At this point, I'm sitting on the exam table in the Peri office with uncontrollable shaking. Ava was only 27 weeks. I knew how important it was to get her to 28 weeks when the chances of survival increase dramatically. I was terrified of losing her. But off I went to the hospital, calling Rick to inform him he needed to handle Sophia's care and get his butt to Labor and Delivery ASAP. By this time it was around 1pm and they had scheduled the c-section for no later than 5:30pm, most likely 3:30pm if they could all coordinate.

My Peri was kind enough to request I have a labor room instead of going into the cold and sterile pre-op room while awaiting the c-section. Labor rooms are large and cheerful, with soft lighting and big screen TVs. The pre-op room makes you want to bug out. I'm grateful that they knew I was on the verge of completely bugging out. The nurse came in and we discussed my needs to hold Julia after I got settled back in from operating room. I knew Ava would be whisked away to the NICU, and felt it would be a good time to have some cuddles with our Julia, and possibly get some pictures of us with her for a keepsake. The nurse set up a photographer from Now I Lay Me Down To Sleep, which I was incredibly grateful for. I had been given a nudge in that direction from a dear friend, researched the local photographers, and stalled. I just couldn't make the contact while trying to keep it together. I am so happy the nurse was able to coordinate.

By then, Rick had showed up and we were getting close to delivery. The c-section was fairly uneventful as far as prep and delivery. We did have a team from the NICU present, including the delivery nurses, a respiratory therapist, and the neonatologist, among others that were observing. They had come in silently after I was curtained, so Rick had pointed it out to me while my Peri and my OB were doing their thing. When the Peri cut through the bag of waters, apparently Ava was anxious to get the hell out of my bad news uterus, because the Peri said she's never seen a baby literally pop her head out without any assistance. Ava come out crying with beautiful color. She was plump and alert, and I was immediately notified of this. I was able to relax a bit after that.

It took what seemed forever for Julia to be delivered. Rick looked at me and curtly shook his head no, all the words were spoken in that brief gesture. I knew she just didn't look good. My heart sank because I wanted her to look "normal" enough to spend some time with. We had been warned of how she may look, and Rick's reaction meant that she was not the way we had wanted to see her.

Ava was taken to the NICU after initial assessment in the OR. She weighed in at 3 pounds, 3 ounces and was continuing to do well. They told us she would be ready for Rick to visit shortly. I still had about 4 hours back in my room for post-op observation. I was rolled in and the photographer was already in the room taking pictures of Julia. I wouldn't have known she was there unless I was looking for her. She was discreet, and when we made eye contact she softly told me her name and asked if we wanted pictures with Julia. I needed this, no matter what Julia looked like. She was my baby girl and I needed to feel her in my arms. I will say that it's doubtful we'll be sharing pictures of this occasion. I have already tried to replace some images of her with images of Ava, because after all they are identical twins and she was meant to look like her sister.

After we said our goodbye to Julia, the chaplain came in at Rick's request. Rick had wanted the girls blessed and I found this to be touching because it showed that he was suffering as well. He's been strong for me and I've been strong for him, and in the process we've tried to let little emotion come between us. I think we both knew it was time to start breaking down that wall. The chaplain called Father Nick, who had baptised Sophia and was also a familiar presence in Rick's life with his time donated to the Boys and Girls Club at Salesians. Father Nick came and blessed Julia, and then followed Rick to the NICU to say a prayer over Ava. After they came back, we discussed options for Julia's remains and decided that we would cremate her and have a tribute for her once things settle down a bit and we can focus wholeheartedly on Julia. This probably won't happen until Ava is home in a few months.

I stayed in antepartum for my recovery. It's a section of the maternity ward that usually cares for women that are hospitalised before they deliver, and so the rooms are bigger than the postpartum rooms and have extra amenities. It's also in close proximity to the NICU. On the way to my room, they were able to take me over in the gurney to see Ava. She was tiny and beautiful and such a miracle to get to see.

Welcome Ava Marie

Our little 27 week miracle, Ava Marie was born via c-section at 3:47 pm, weighing in at 3 pounds 3 ounces. She literally popped out and immediately made her presence known with some good cries. She currently resides in the NICU (neonatal intensive care unit), where we anticapate she'll stay for the next 3 months. She has been doing well and exceeded all expectations so far. It'll be a long road but we are so excited to welcome our baby girl into this world. Birth story to follow shortly.

Preterm labor and more complications

I hope to at some point be able to write about happy news for this pregnancy. This is not the case today. Yesterday I lost my mucus plug. Sort of a funny side note--when I called Rick to tell him this, he offered to help me find it when he got home. I realized he had no clue what a mucus plug was, and really why should he? Anyway, I started freaking out and immediately called my Dr. so they had me come in to my appointment earlier to check things out. By the time I got there, I was having some contractions that were starting to get uncomfortable. They hooked me up to some monitors and told me that I was in preterm labor. I'm on some medication to slow down the contractions now, and today I feel a bit better. The meds make me feel a little out of it, and last night I had a horrible headache because of them, so I didn't take the next dose. I got reprimanded at my Dr. appointment today for not taking them, and was ensured that the headaches will go away once my body adjusts to the medication. So that's the good news, it seems that we can buy some time with the meds.

The bad news is that baby A is having some problems now. They found fluid around her stomach area yesterday during the ultrasound. This can mean a few things: a) baby B's death is impacting her and she's getting some bad stuff passed through the placenta or b) with baby B's passing, the blood flow shifted in the placenta, which is making baby A anemic or c) some other unexplained issue. Right now we are in wait and see mode. If it's the anemia issue, baby A's system should kick in and make the required blood cells to repair things. If it's the bad stuff from baby B's connection then we really won't know how things will go, but that's what we have hoped won't happen through all of this. The same with the unexplained issue, there's too many unknowns.

The only thing they can do proactively is take a sample of baby A's umbilical cord blood to find out if she is anemic and if she may need a blood transfusion in utero. This has risks, and would be a procedure performed at Stanford. Right now it's something available but it's better to wait and see if her fluid increases in her stomach and if it starts to appear in other areas.

I have an echo scheduled to look at baby A's heart tomorrow and then another ultrasound at the Perinatologists, and probably another non-stress test (NST) to look at how baby A is overall handling things.

Delivery isn't a great option right now. When a baby is sick inside the womb, it's only compounded by a premature delivery and adjustment to the outside world. Premature delivery in itself is very stressful for a baby. Add in other factors and the chances of survival really fall. It's best to try to fix whatever is going on in utero and try to keep her in as long as possible. Every day she's in the womb is one less day she'll have to fight in the hospital.

I'm completely defeated. I knew there was a possibility of things turning in this direction, but I really hadn't believed it would actually go there. This has been such a constant struggle and I'm just hitting a wall at this point. But we have to take it one day at a time and go from there. So that's where we're at right now. Today, the appointment was fairly uneventful. Baby A's heart rate is looking better than yesterday, her fluid hasn't seemed to increase, and all other organs are functioning as expected. I'm not dilated, although my cervix has shortened from 4cm to 1 cm, so my body is trying to go into labor but it seems that the meds are helping.

Answering some questions

Everyone goes through grief differently, so how would anyone know what to say or do since it's such a personal thing? As for us right now, we are just trying to go about life as normal as possible for the sake of Sophia, for our own sanity, and for baby A who doesn't need additional stress on her growing body if I completely lose it. To be honest, everything still feels like I'm carrying twins. My belly is huge, I'm uncomfortable, Sophia talks about her sisters and my belly getting bigger, random strangers make comments about how I look like I'm going to give birth any minute. And I haven't adjusted my comments to Sophia or these strangers. I'm not sure what to say to Sophia right now, so I'll let her go on talking and then hopefully at the end of the day she'll have no questions about anything. As for strangers, I think I'll probably just smile and say, "yeah, any minute now" and move on. As for what people will say once news travels, I'm anticipating some unintentionally hurtful things such as "it was meant to be, you should be grateful you still have one baby, it is God's will, it's probably for the best, at least she's not suffering, at least she doesn't have to suffer through birth, or describe someone they know who had it worse, etc." Just an "I'm sorry, let me know if I can help, you guys are in my thoughts, and an acknowledgement that Julia Bea is real and meaningful" to us is all helpful and comforting.

So what can you do to help? Nothing. A phone call or an email is comforting. Don't be upset if it's an off day and I don't respond, just knowing you care means everything to us. Please don't avoid us, that's isolating in itself. Anything else to acknowledge Julia's death is uncomfortable for me (us) at this point because we really can't start the grieving process, and it just opens up more questions for Sophia because she's so curious and so observant. I think (I know) it'll hit once I've delivered these girls. There are still so many unknowns as to the outcome of things so I'd rather just try to keep in a state of denial and get through the next month or two (or three), however it goes.

What happens to Julia Bea now that she's passed? Well, she stays put and keeps her sister company for the remainder of the pregnancy. Until delivery, we won't get to meet either of our girls. I had a follow up ultrasound the following day of finding out she had passed, and so far the blood flow from the placenta and all other things look great for baby A. She's not acting or looking like there's any stress of her sister passing. Rick and I have started the discussion of honoring Julia once she's born but that's in the future and something we'll hold off on until we have more clarity.

Can anything happen now that Julia's passed? Yes, and I'll be monitored closely for at least the next two weeks to see how things are going. Since no one really knows how things will turn out given this unique situation, my Dr. wants to just take things one week at a time. A few things can happen: I can go into pre term labor, I can get an infection, baby A can also pass away for whatever unforeseen issues with the connection through the placenta, or things can go relatively normal and I can end up having a perfectly healthy baby A. We're still looking at a 20% chance that baby A may have some neurological issues due to Julia's passing, because depending on the share of the placenta, blood clots can form in Julia after death that pass through the placenta and into baby A's system. This usually results in a stroke or seizure which then leads to possible brain defects. But we aren't there yet, and there are no signs during follow up that any of this has occurred. I was told it usually takes place immediately, within the first hours of the co-twin's death. Although the ultrasound can't pick up the minor details of the brain, there are a few indicators such as brain swelling and such that may indicate some problems. Baby A didn't show any of these signs with the follow up ultrasound. An MRI may be able to pick up better detail, but what's the point? We're in this for the long haul with baby A and can only hope she fairs well through it all. That's one of my biggest fears at this point, but I have to keep the faith.

Thank you for your love and support. Thank you for just calling or sending a note and saying you don't know what to say. I totally get that. I don't know what to say either. I do know we'll get through this, whatever the outcome at the end of this journey. I am grateful to have the distraction of Sophia, the strength from Rick, and the support from my family and friends. I can't imagine going through this alone, and I haven't had to. You've been with us all the way.

Remembering our babies

Today, October 15, is Pregnancy and Infant Loss day.

Julia Bea

I had wanted to save her name until birth, but Julia Bea had other plans. Baby B, who we named Julia Bea, passed away sometime between last night and this morning.
Julia means "one who is youthful and daughter of the sky" and Bea was my grandma's first name (short for Beatrice) which means "blessed or one that blesses others." And she will always be our baby "B." I've been hopeful that she would survive this ordeal and continue to beat the odds, but it's time to accept that the miracle we wished for is not going to happen. I guess as much as I tried to prepare for her loss, having the finality of it be pronounced is just impossible to grasp. I've been through my share of loss and I know it will take time. For now I'm just going to try to stay strong for her sister, and try to postpone the mourning as much as I can until we can get through this pregnancy.

26 weeks with twins

Less than 100 days to go if I were to have a normal singleton pregnancy, realistically 1 more month to go with a complicated twin pregnancy. I got brave and took a belly shot. Yikes.

Compared to my 26 week belly shot when I was pregnant with Sophia.

Echo round 3

It's taken me a few days to figure out how to write down my visit with the cardiologist. I needed to process the information and try to step away from my inner thoughts.

I mentioned in a previous post that my Perinatologist and the Fetal Care Center of Cincinnati recommended another echo for baby B to see if the Cardiologist can find an accurate diagnosis of coarctation and/or left ventricle narrowing. I had hoped that this Dr. could pinpoint the specific needs of baby B once she is born. After quite a bit of looking, the Dr. couldn't really determine either the coarctation or the ventricle narrowing. His equipment was quite dated compared to the cutting edge stuff they had in Cincinnati.

However, he threw a bit of a bomb when he mentioned that baby B's lungs were severely underdeveloped. My Perinatologist had mentioned this in passing two days prior but I didn't focus on asking too many questions at that point. At this echo appointment, I had a chance to get a little bit more detail. My first thought was "if it's that obvious how underdeveloped the lungs are, how come no one has mentioned this until now?" But that wasn't a question for this Dr. Actually, I'm not sure why lung development falls under the heart specialist diagnosis, but at that point I just wanted some answers. When looking at baby A's lungs, I saw the significant difference. Baby A's lungs surrounded the entire chest cavity with the heart snugly inside and slightly off to the left. In comparison, baby B's heart hung completely under the lung area in plain sight, and the lungs were clearly above the heart, with the rest of the chest cavity filled with fluid. Since most of the ultrasounds have been focused on baby B, I hadn't had that type of side to side comparison in quite a while.

The Cardiologist told me that the heart issues, if any could be detected at one point, were secondary. No lungs to hold oxygen, no heart needed to pump oxygen to the lungs. He was "fascinated" (OK, this is the word choice that pissed me off and was the major reason I started to just want out of the appointment and march straight over to my Perinatologist office and scream) fascinated to see a surviving baby with so much skin edema, hydrops and such a large cystic hygroma. His prediction was that baby B would not make it to delivery. I asked him from what prior experience he based this assessment and he admitted that (wait for it, wait for it...) he's never seen anything like this and that she really shouldn't have survived this long. Congratulations Dr., you are now part of the majority here that has an opinion of fetal demise but no categorical evidence to back up your claim. That's pretty much where I decided the appointment was over. I'm not being naive here in thinking that baby B is going to come out of this healthy, and I've prepared myself that she may not make it past delivery. But I'm getting pretty tired of the fact that baby B has continued to beat expectations and yet no one is taking this into account that maybe the unexplainable has to do with them being identical twins, sharing a placenta, and having some connection whereas baby B is being helped along by baby A's absence of any issues.

Clearly this appointment was upsetting. We've been trucking along here thinking that even with a heart issue, there may be a chance of survival. Hearts can be operated on. Lungs can't. It's not clear what impact a steroid shot would have on baby B's lungs. This would be administered mainly to support baby A if I need to deliver them early, but it certainly wouldn't hurt baby B. However, with the lungs at the stage they are now, it doesn't look good.

I have a lot of questions for my weekly appointment with my Perinatologist this Wed. and hope to at least gain a little more perspective as to why this hasn't come up in conversation either here or in Cincinnati.

Viability

Technically 24 weeks gestational age is considered viability, but I didn't have an appointment last week so I saved the title for this week. I think with this new milestone, there comes a lot of anxious feelings. As I discussed in a previous post, we all agreed not to deliver until after 28 weeks, no matter what happens with baby B's situation, but knowing that these babies could potentially survive outside the womb makes that decision so much more weighted. Up to this point there's nothing that could have been done to keep the babies alive outside the womb, so knowing that there can be something done if I had to deliver--albeit extreme measures and less than stellar odds--it's still like that carrot all of a sudden appeared and it's dangling in front of my face. My Dr. said it's like playing with fire and now it's grown into an inferno. He also mentioned something about jumping out of a burning building from the 64th floor and now I'm at the 16th floor...but I sort of zoned out from playing "who can come up with the cutest analogy" and started to think of all the more pressing questions I had. So anyway, starting from the beginning...

I had an ultrasound today and baby B still has a strong heartbeat at 170. It's a little on the high side but still within normal range. I could relax a little bit more after knowing that. The fluid is still growing with baby B, which is a little disappointing but not unexpected. I try to suppress that thought that maybe this week will be the week that she shows improvement in her cystic hygroma and hydrops, but it creeps in and of course it stings a little that she's not "getting better" even though she's not getting worse. But as a mother, who wouldn't have that hope still? Baby B is measuring at a whopping 8 pounds, completely off the charts for a 25 weeker. It explains why I am so uncomfortable. This is the size of a 40 weeker ready for delivery, not to mention I have another 1 pound 3 oz baby A trying to fight for some space. I decided she has the right to kick all she wants, little baby A...she's trying to defend what little space she has. Baby A is still doing great. Apparently the tight quarters aren't impacting her growth or development. It's kind of funny to see them both just so squished in there, even though technically they have plenty of room with the amniotic fluid.

As I had suspected, my perinatologist that I see most often but hadn't seen the last few visits, had kind of sort of handed me off to his associate perinatologist. No one had confirmed this, but I had an idea that he might do this once I became "maintenance" and less interesting. Although today he popped in and confirmed my suspicion with a "I'm back and taking charge" when he entered the room. I asked him why I became interesting again, sarcastically of course. As snarky as he is and as negative as he can be, I like the guy. I really do. He is no nonsense, he doesn't sugarcoat, and it's kind of fun to test his ego by proving each appointment that this baby B is exceeding his expectations. But also, I do agree with his thought process and I feel that we are on the same page, even though my glass is half full and his is half empty. So he told me he doesn't think the steroid shot would be helpful until at least 28 weeks. I agree. He doesn't feel like I should be shipped off to Stanford to have the babies, for way more complicated reasons that I won't go into. I also agree with him there. He said the neonatologist meeting was premature. Ditto.

Bottom line is this: baby B is adding a lot of stress on my body. It would be a miracle if my body can get these girls to 32 weeks, but that's the goal. I am currently the size of what a quadruplet pregnancy would be at this point and sometimes the body decides it can't stretch that fast and furious anymore. We aren't there yet, but there's another growth spurt that typically happens around 28 weeks, so we'll see how my body handles that. We're still discussing my going into the hospital at 29 weeks (I bargained an extra week out because that happens to be Halloween and if I have to be in a wheelchair to take Sophia trick-or-treating, then so be it).

I have an echo scheduled for this friday, and from here on out until delivery or hospital stay, I have weekly ultrasounds scheduled to monitor things.

My supporting cast and crew

I very rarely discuss my online support group. I've been blessed and honored to be a part of a special group of women that met online during one of the toughest moments of our lives. Back in 2006 when I had my first miscarriage, I was looking to make sense of it all and to find some kindred spirits in the journey of getting back to trying for another baby. I think I cyber stalked them for a few months, cautious of getting involved. I'm not the type to join anything, so this was something I felt was a big step emotionally. And then I thought, "what the heck do I have to lose, I don't know these women." Months went by and slowly women started getting pregnant with their rainbow babies (pregnancy after a loss). Some women went on to have another painful loss, some had babies within the year. Others, like me, took a lot longer to get pregnant. What we had was the strength and support of all the members who "got it." Miscarriage is not something usually discussed with family and friends. No one in my family or any friends had experienced this and although they were there for me and felt my pain, they didn't "get it" like these women who had been through it. And how could I expect them to?

Over the years, some of us have met up in person. We had a reunion in Texas where a group of us were able to meet and hang out for a few days with our babies. It's interesting how after a few years of chatting online, you really do know a person. That face to face interaction may not be there, but the soul transfers through the words. It's hard to understand and Rick surely didn't get why I'd spend an hour or so a day corresponding with women "I didn't know", but after hearing about their lives and meeting some of them himself, he agrees what a great group of women I lucked out finding.

When we were in Cincinnati, we met up with two of the women and their husbands for dinner. It wasn't awkward, there were no nervous gaps in conversation. It was a fun dinner with friends and random talk just like any other dinner would be. It was also a much needed break from the stress and emotion of the long appointments. We had "family" in a place we had never been, during a time that I'd never want to relive. But we had one night that seemed normal and took us away from why we were there in the first place.

One woman lives fairly close by so we get together periodically for play dates. We were invited to her son's birthday party last week. As we were leaving, she told me all our "Lil PALS" got together and wanted to do something for me during this time. She presented me with a styrofoam cooler, packed with a weeks worth of frozen prepared dinners from a gourmet service. With that were gift certificates for take out and grocery, a DVD and coloring book for Sophia, and a delicately made scrapbook of all the Lil PALS kids and a note to me. I was so deeply moved by their generosity and love to do this for me. For my family.

I just want to give a big shout out to my supporting cast and crew that is seemingly behind the scenes, but such a very large part of my everyday life. Without you, I really don't know how I would have ever survived what is typically a very lonely struggle through infertility, miscarriages, and pregnancy complications. Thank you.

A little Sophia catch-up

For those family members that check in to see updates of Sophia, I think it's a little overdue and much needed. Sophia is already into that "why" stage for everything. And I try to answer her questions to the best of my ability, sometimes impressing myself with answers to random questions! But even when I give her what I think is a good answer, she says "because why?" Where the heck did she get the "because" part of it? I never answer "because" so I have no clue. This little girl is stubborn, too. Yes, karma, I know. But she's actually really easy to reason with. As long as I tell her exactly what is going to happen and how it's going to happen, she'll go along with it. But if I try to spring anything on her, she is completely resistant. She prefers Daddy's tools over baby dolls, picking up bugs instead of picking flowers, and rough housing over cuddles. But she has her girlie side as well. She loves to wear dresses, wants to wear lipstick, and she's infatuated with anything Tinker Bell (although Tinker Bell is a bit of a sassy tomboy, so I guess Sophia can relate). She's a week shy of 2 1/2 years old now. We are still working on potty training which is going slower than I'd like. It would be fantastic to have her out of diapers before these babies come, but one thing I've learned is that Sophia will do it when she's good and ready. I just hope it's sooner than later! She's become quite the picky eater, so any effort of cooking dinner just for her is wasted. She'd rather have the processed chicken or fish sticks, quesadilla, or grilled cheese sandwich. She's even started resisting my pasta dishes, preferring Kraft mac 'n cheese over anything I make. I still hold out on these things for most of the week, but by the weekend I give in and let her indulge. She still loves fruit and beans!

my gifted child...

the artist

fashionista

adventurer and animal lover

daredevil

Another "new" OB appointment

Now that I'm officially transferred to the Peri for all pregnancy stuff, I had to have an OB appointment. Got the results that I passed the 1 hour non-fasting glucose tolerance test. This is not only a good thing as far as my blood sugar and diet are concerned, it's also going to play a part in steroid shots to help the babies lungs develop in case they deliver early. The steroid shot also tends to jump the blood sugar levels in ones system, which can cause complications if one doesn't tolerate sugar well as it is. So at least it's something additional that I don't have to worry about. I am still trying to figure out the risks and benefits of getting a steroid shot at 24 weeks vs. later on, maybe 26 or 28 weeks. They can only do the shots 4 weeks apart and for 2 doses because after that, there can be a risk of adverse impact on the babies, including small head circumference and slowed body growth. So I'm hoping that with a little more research I can make an educated decision in the next week or so.

With the outbreak of whooping cough in California, the new recommendation is to give a Pertussis booster to pregnant woman. While I'm all about vaccination, I just feel that adding more to this already precarious situation may be too much, and there aren't too many statistics about side effects for pregnant women and unborn babies. Also, it's just recommended for women in the 2nd and 3rd trimester-- these are red flags for me. So I opted to have the vaccine immediately following delivery and I'm going to see if we can get Rick one at the same time. I did get the flu shot at the appointment. And they added the H1N1 to the regular flu shot this year so that's a bonus.

Preliminary discussion with the Neonatologist

While I think it may have been a bit premature to have a meeting with the Neonatologist, the Perinatologist advised I have a discussion to get an idea of what risk/benefit there may be for delivering the twins from 24 weeks on out. Yes, 24 weeks is insanely early and the specialist agreed with my decision to hold out until 28 weeks at the bare minimum. Of course who knows what the actual decision would be if baby B shows signs of going downhill quickly before 28 weeks, but the odds of survival before a 28 week delivery are 50%, not to mention the risks of blindness, deafness, mental disabilities, brain aneurysms--the list goes on and on--are incredibly likely before 28 weeks. Not to say there aren't babies out there who have been born before 28 weeks that made it out perfectly fine after months in the NICU. But realistically, twins are already prone to be born underweight, so it would not be an optimal condition to start from. And looking at the current statistics of baby A's likelihood of having adverse effects if baby B doesn't make it in utero, it's a 20% chance she would be impacted. Giving birth to her before 28 weeks gives her a 50% that she would be impacted. I'm not great at math, but there is finally a statistic thrown my way that I don't have to flip a coin for.

But really, the conversation wasn't about baby A with the Neonatologist. It was about baby B and how her current condition in utero may play out outside of the womb. Bottom line is that it's not good. Feel free to skip the rest of this post if you don't want to read the nitty gritty. You've been warned.

The conversation started out fairly straightforward. The hospital I am scheduled to deliver at has a level 3 NICU (neonatal intensive care unit) with doctors that work at this hospital and at the Children's hospital as a cohesive team. If surgery is required, the hospitals would coordinate to transfer baby B to Children's hospital once she's stabilized. Children's hospital is not set up for deliveries, and my hospital is not set up for that type of surgery. A team would be present in the delivery room (in my case the operating room where I will have a c-section) that would be able to intubate and put an umbilical line in baby B in case her heart does need surgery. As for baby A, depending on the amount of prematurity, both hospitals are equipped to handle her. She could also be transferred to Children's once I am released from the hospital, so we wouldn't have to make two separate trips. Straightforward.
Then I started asking the tough questions:

Has this Neonatologist ever cared for a baby with this size cystic hygroma?
Yes, he has seen this and most often the cystic hygroma outside of the womb of this size will have some impact to the airway and they may not be able to intubate. She may not be able to breathe on her own and they may not be able to do anything about it. They would suggest that everything done to make her comfortable and let us spend as much time with her as possible until she passed.

Has the Neonatologist cared for a baby with the level of fluid inside her body and also with the amount of skin edema she has collected?
Yes, he's seen this as well though not in addition to a cystic hygroma. Typically the hydrops causes problems once the baby is born because it is at this time that the lungs, heart, and other organs really need to work. If the fluid is pressing on these organs, they will not function properly and may have not really developed properly at all given the fluid in utero. While in utero, the baby relies on the placenta to do the heavy lifting. Outside of the womb, she's on her own. Draining the fluid will only help at that point of time, but the underlying reason for why the fluid is there will continue, as will the fluid typically build back up.

Has this Neonatologist cared for a baby with coarctation of the heart?
Yes, they typically stabilize the baby and transfer the baby to Children's for a fairly routine procedure that involves minimal risks. It would not be open heart surgery. They would go in through the side with a bra line incision to repair the coarctation. However, baby B may also have left ventricle narrowing, which would be an invasive surgery and may require future surgeries. I will have another echo on baby B's heart in the next few weeks to see if the cardiologist can pinpoint what really is needed. Even with two echos in Cincinnati, the images weren't great enough to be able to determine the exact issues she has. However, they would need to have her stabilized, and the cystic hygroma and hydrops add a lot of uncertainty that would happen at all. Not to mention what type of surgery is necessary and they may recommend making her as comfortable as possible and do nothing.

Has this Neonatologist ever seen a baby with Turner's Syndrome present all of these factors and survived? No. Not only has he not seen a baby with this much going on, he's never seen a baby with half this much fair well. But here's the thing. California is very liberal with abortion and most often when told that their baby has these issues, they decide to terminate the pregnancy. And never has there been a situation where there is one baby who has all these issues, and a co-twin who has no issues. Most often the specialist are dealing with a singleton pregnancy.

The Neonatologist admitted that my situation is like nothing he's seen and that he is going to put some calls out to other colleagues to discuss further. He told me that any decision we decide to make during this process and after the babies are born, are completely supported. Because quite honestly, no one knows what may happen and no one knows what the best decision will be. It may also be discussed to have me deliver the babies at Stanford, where they have the advantage of a delivery and level 4 NICU at the same place. This is something we'll discuss further out.

So here's the human side of things. The Neonatologist asked how I'm even capable of having this bare bones discussion and keeping it all together. He said he's never had a discussion with a parent that seemed more like talking to a colleague. I'd been asked this in Cincinnati. I get that it's hard for people to imagine having to have these discussions. I also know that if I broke down and cried or sat there in silence, I would not get half the information I need to make an informed decision. If I don't do my own research of medical journals or message boards with humans telling their stories, I wouldn't have those questions to ask. I know I'm in uncharted territory here, and I owe it to these babies to keep it together for their sake. I have my moments, definitely. But we've made the decision to see this through and there's no going back. From here on out I have to stay informed and listen to all the grim stuff, while keeping hope that maybe, just maybe baby B will prove everyone wrong. Maybe a miracle is out there waiting for us. It's up to her, baby B, how this plays out. And she's been quite strong. Or maybe baby A has something to do with baby B's strength. They are connected to the placenta and vascular structure. Who's to say they aren't fighting as a team to keep it all together? The doctors surely don't know at this point, so until we have any indication that things aren't going to turn out, we need to keep strong and hope for the best possible outcome.

Scheduled bi-weekly ultrasound

Now that we are in maintenance mode here for the remainder of the pregnancy, I will have an ultrasound every 2 weeks until probably 28 weeks, and then possibly hospital stay until the golden number 34 weeks. That's as much of a plan we can set, depending on unforeseen circumstances.
So yesterday was my scheduled ultrasound and baby B is still status quo. Her fluid continues to grow with her, and stays about the same in relation to her body size. The cystic hygroma is 13 cm at this point, which is wildly large. But she really doesn't seem that affected by it. She kicks and moves just like her sister, baby A. The hydrops continue to be present, although her heart rate doesn't seem to be impacted by the fluid either, it was within normal range of 176.
I am officially a patient of the Perinatologist office now. The Peri ordered a non-fasting gestational diabetes test, which I had done yesterday. My blood pressure looks good and there is no protein in my urine. The last thing I need is any other complications. I had the Peri check out my varicose veins and was told there's really nothing that can be done about the one in the groin/inner thigh area. The Peri also set up a meeting with a Neonatologist yesterday, which I'll expand on in the next post.
As for other things, I can feel pretty steady movements from baby A on the right side. She's the boxer. Baby B isn't so predictable, but I can feel her softer kicks on the left side. I can also feel kicking from the outside now, which is fun to share if someone is around. Sophia has yet to feel anything, but she hugs and kisses her babies regularly now. She says, "Awww, I like the babies!" And plants kisses on my tummy and tries to wrap her arms around the enormous mass to give them hugs.
Speaking of my enormous mass of a belly, I got some new maternity tops last week and hopefully they last through the remainder of the pregnancy. I also got some leggings which I swore I would never wear again after the fashion fad of the 80's-90's, but once I put them on I just had to get some. I hate to admit how comfortable they are.

"Normal" complaints

I've decided to give myself a free post to complain about normal twin pregnancy things. I remember when I got pregnant with Sophia telling my OB/GYN that I hoped I was pregnant with twins. She looked at me very seriously and said, "No you don't." I felt that was a little harsh. We'd been trying for so long to get pregnant, I wanted a jumpstart.

So now we are in the present, and boy what a challenge it is being pregnant with twins. OK, besides the obvious craziness of the last 2 months finding out the additional challenges we are facing. I mean the actual pregnancy stuff.

I have a road map of a large city on my left leg. These spider veins have taken over the entire lower calf, and are starting to move their way up my thigh. And I'm sure it's no coincidence that I have a huge varicose vein protruding from the left side of my pubic bone/inner thigh area. That varicose vein I've deemed the culprit who has decided to set up his battalion to trail blaze down my leg. And it hurts. Throbbing hurts. No, I refuse to wear support hose. I know the suffering will fall on deaf ears from my Peri and OB/GYN who insist that is the only way to go.

I've invested in a support pillow. Boppy makes this new one I like a whole lot better than individual pillows, and it's more comfortable that a pillow I had bought while pregnant with Sophia. This allows me to turn from side to side better, because that's what I spend my whole night doing. I can't get comfortable. I have a mini fortress surrounding me and any attempts from Rick to cuddle anywhere near me is futile.

Speaking of sleeping, I now wake up an additional time in the night due to acid reflux. So twice to go to the bathroom and once to take some midnight Tums relief.

I feel like my stomach is literally going to split in half and out will project these babies and my guts in a B rate style gore flick. Something has literally got to give here. Every once in a while I feel this tearing sensation, as if my skin ripped a little on the inside.

I can't lift Sophia out of a shopping cart anymore. No more trips with her to the grocery, Target, grocery, grocery...grocery. This is devastating to me. Sad, but true.

I can't wear my normal bras. I don't fit into any of my old maternity shirts. It's hard to shave my legs, tie my shoes, get up from a sitting position, breathe.

I'm sure there are a few more, but these are the biggies.

Did you know I'm only halfway through this pregnancy?

Que Sera, Sera

Remember the song Doris Day sang? Look up the lyrics if you aren't familiar with the song Que Sera, Sera. It seems fitting to be humming this tune in my head as I write this update.

So here's the technical part: I had a level 2 u/s for fluid level check for the cystic hygroma and hydrops in her stomach area. I repeated an echo for her heart as well. The cardiologists found a small coarctation of the artery and a possible right ventrical narrowing. Both issues would not be detrimental in utero, however will most likely require immediate heart surgery to correct within the few days after birth. This information is helpful to us because if she does make it, she'll require a cardiac team to be available upon delivery to insert an umbilical IV to give her medication to keep the valve open until they can do a procedure.

We met with the team at the end of the day and discussed the options. Because they feel that the fluid levels in the CH, hydrops, and skin edema appear to be stable, they think she may have a chance of survival to birth. Due to the hygroma size of 4 cm, they don't feel she will make it full term so the best case scenario would probably be to have a c-section at 30 weeks to help her sister (baby A) get as much development as possible and increase her chance (baby B) to develop so that it would be less of a risk for her heart surgery. Why can't they drain the cystic hygroma and/or hydrops? Well it's ultimately a lymphatic system issue and the fluid would come back unless it starts to correct itself on its own. That's the wait and see part. Also, draining would cause increased risk of rupturing the membrane (preterm labor) and these babies are constantly moving and kicking, so there isn't a lot they could do to keep her still enough to make sure they don't puncture other areas.

The RFA (cord coagulation, basically termination) of baby B is no longer an option due to multiple reasons, mainly ethical but also that their statistics show 1 out of 4 RFA procedures has resulted in the loss of the co-twin. So while this would be the last possible option, the idea would be to protect baby A and instead it shows that by doing this we may increase the risk of death to her.

The separation of the placenta (they have equal share of one placenta) is also too risky to chance for us, given their statistics and due to the positions of both babies, and also that I have an anterior placenta. They also cannot guarantee that they'd be able to successfully separate the shared veins without risk additional risk to both babies and also risk to myself. So with all that information, we decided to do nothing. This decision comes with many risks, but they seem to be less than doing a procedure. Baby A is at an increased risk of cerebral palsy and brain defects if baby B doesn't survive in utero.

There were circumstances that were mentioned that were not mentioned in the last trip. I feel like I got more results and clearly defined parameters this time, where there were a lot more questions the last time around.

The absolute bottom line is that no one has ever dealt with this particular circumstance and they are not comfortable making a decision with absolutely no data to give them any reference. The only data they have is for one twin who would not make it, no matter what. Never have they had a situation where one twin "might" make it if they do nothing.

The doctor in Cincinnati told me I'd most likely have these babies by 30 weeks. A few things point in that direction. Baby B is taking up a lot of room with her fluid in her cystic hygroma, which puts a lot of more pressure on my system and typically these type of babies deliver earlier, even in singleton pregnancies--so in a twin pregnancy it's that much more complicated. Also, there may have to be a decision/compromise between baby B's health as she continues to grow and baby A's development. 30 weeks would be that magic number where they both would have a good chance at minimal time in NICU for baby A and baby B's development would be just enough where heart issues, etc. won't pose any additional risks than already present by being premature. Anything before 30 weeks (26 weeks to 30 weeks) would add additional stress to baby B by getting her developed enough to add heart surgery onto the list of premie issues, and baby A would also have premie issues to deal with. Anything after 30 weeks may start causing concern if baby B shows no signs of fluid levels going down, as mentioned above. They won't want to risk preterm labor knowing that I'd need to have a cardiac team on hand when baby B comes out. At this point in time (20 weeks) baby B's fluid levels seem to remain the same and are growing in relation to her development. So while they'd like to see the levels go down, it could be that they stay this way the whole time. If the fluid levels stay this way until birth, the cystic hygroma could be drained, but may come back and eventually resolve as the lymphatic system matures, or it could come back if she gets an infection at some point in time. This could be an issue that will be managed into adulthood.

I see my regular Perinatologist tomorrow to discuss things moving forward. I had called him from Cincinnati after the consultation and he's concerned about his diagnosis vs. the diagnosis with the team in Cincinnati. So he was going to talk to the doctors to see if maybe they had a medical opinion other than what they shared with me. Even if so, unless we see significant changes in baby B's condition, it's que sera, sera from here on out.

Hello and Good-bye Cincinnati

After another whirlwind trip here and numerous tests once again, we've decided to do nothing and let nature take its course. Baby B looks like she may be stable enough to survive the pregnancy, with some heart issues that can be corrected surgically once she's born if needed. The reason for doing nothing is basically the better of two evils. We are certainly not out of the woods, but the procedure on the placenta could actually turn out to harm both babies and could harm me because of the additional complications. I will update this when we get home and after I get some sleep. We head out first thing in the morning.

Going back to Cincinnati

So we "made it" to the 20 week mark, where the specialist at the Fetal Care Center in Cincinnati feel that this time frame offers the best scenario for approach to the uterus and placenta. Everything is set to go, and we leave tomorrow. I hope to have the same access to my computer as last time to update along the way. Monday will be another full day of more evaluations, starting with an ultrasound first thing in the morning. We end the day with another consultation with the surgeon and then we'll have all the plans in place for whatever procedure is decided.

Some odds and ends, while I'm getting things organized for the trip...

Sophia is starting to cooperate for the camera again. It's been a frustrating past 6 months with her flat out refusing to have anything to do with either posing for the camera, or pretending that it's not out. And if she just has to pose, she puts on the fakest smile that it's not even worth the effort. But maybe things are changing, as proof here:

While preparing for things to come, I've gotten very focused on some projects that have been looming over my head. One in specific has been haunting me every time I walk into Sophia's closet to get her dressed. She has a billion clothes, thanks to Heidi and Erin who have given us so many adorable clothes from their daughters. I've accumulated those in addition to the ones I supplemented from newborn to 3T. Sophia is currently in 4T, and I've run out of closet space to make room for anything else. I had 14 large storage bins full of past clothes to sort. I needed to throw away the stained ones and put aside the well worn ones for donation. My mom came over this past week to help and we ended up with 4 large construction Hefty bags full to donate. Here's the start of our daunting task:
Too bad I didn't take an "after" picture, but I think you get the idea.

And last but not least, I know I was very religious about getting bi-weekly belly shots with my pregnancy journal of Sophia. But this pregnancy has been such a roller coaster I had moments that I thought maybe I didn't want to look back on this. However, it's not fair to these babies that I'm neglecting them their own journal along the way, so here's the 19 week belly shot.

Pictures of the twins and baby B's cystic hygroma and hydrops

I've been having weekly follow up ultrasounds since we got back from Cincinnati Children's Hospital. Mainly, we're tracking baby B and how her cystic hygroma and hydrop fluid levels are. It's a tricky thing to measure, given that babies move and they aren't always on an equal plane. So we've discussed how to get the most accurate standardized measurements and I think this week is the first time that each of the medical teams can get a comparison reading from the images.

From what my Perinatologist has noted, the fluid levels have pretty much stabilized in baby B. Of course I'm hoping for the levels to go down and start to resolve completely, but at least they don't seem to continue to significantly increase.

I know it's hard for someone that isn't trained to read ultrasound images to see where baby B is impacted, so I added arrows to the area where the fluid is abnormal. If you compare to baby A, which is the next picture, you can clearly see that baby B looks puffy and swollen. This is due to the skin edema as well. The arrows below her body show where the cystic hygroma is located. It almost looks like she's resting on a pillow. The arrows inside her stomach area is where the most obvious hydrops are. The shorter arrows are the skin edema.

Baby A (below) continues to bully her sister inside the womb. Good thing there is a membrane separating these two, or I'd fear for baby B even more. Baby A is very active and likes to punch and kick her sister, push her into the corner and lay right next to her. I've been telling her to take it easy in there, for her sister's sake.

I have two more ultrasounds for the next 2 weeks to continue to monitor things. Both babies are still growing on track developmentally, and both have normal amounts of amniotic fluid. While baby B has a slightly higher heart rate than baby A, both are within normal range. So it looks like, for now, we are on target to go back to Cincinnati at the beginning of September to have the vascular structure of the placenta worked on, so that both these babies will be able to operate independently of each other.

Results and a small sense of hope

Another busy day here. The amniocentesis results came in and are conclusive for Turners Syndrome for baby B. While there are varying degrees of Turners Syndrome, the most common is short stature (typically not past 5 feet in height at full maturity), which can be helped with growth hormones during childhood. There is a chance that she will be infertile as well. There are no mental or physical disabilities associated with this chromosomal defect. While about 98% of Turners Syndrome babies die within the first trimester, once they make it past that developmental stage then it's very likely they will make it to full term pregnancy and live normal lives. I'm now well into the second trimester so that's also a positive going in our direction. It's incredibly rare to have identical twins with one Turners, so there are really no statistics of how it pertains to our specific situation. "Normal" twins are still a high risk pregnancy, so the doctors don't know if this makes it more or less risky.

All signs have pointed to Turners during the ultrasound and even the echo of the heart. Baby B's femur measures shorter than average, her left ventricle of the heart is slightly smaller. There are no anatomical defects present in the heart or in any other part of the body structure, as the MRI concluded. These are all good things, because it points more towards the possibility that this cystic hygroma and the fluid around the heart and kidneys might start to resolve. As of the ultrasound findings today, the fluid levels have stayed the same since Monday.

It's still tricky and there still is no obvious course of action. All the risks are about the same, it's just trying to figure out the best bet to ensuring that both babies have equal chance of survival. There are a lot of factors and a lot of unknowns still, but we are more hopeful of today's findings.
We are coming home tomorrow morning. I'll have weekly ultrasounds to continue to monitor the fluid levels in baby B. What we do know is that the immediate future looks good for both babies. Into the next few weeks, we'll be able to see how the fluid levels are progressing or not and then see if we need another type of procedure that separates the veins both babies are sharing in the placenta. This would give more insurance that the babies have their own environment to develop, and make them independent of each other. The procedure has it's own risks, and typically is not performed before 18 weeks, so we aren't there yet. As of today, I'm hopeful for both of these babies, and continue to put all my energy into willing these babies to survive.

Cincinnati Children's Hospital

We are here. Here we are. Rick and I got here on Sun. afternoon after a pretty long day of traveling. No quick way to get to these parts via airplane, but all in all the trip went as scheduled and we got settled in.

Mon. we went to the Cincinnati Children's Hospital, where I was scheduled for a physical with the nurse, a very detailed ultrasound, and a consultation with the panel of doctors and nurses that would be involved with the procedure. At the end of the discussion, we found that it really was a very complicated decision. The doctor that would perform the procedure felt more comfortable waiting a few days for me to at least be 16 weeks along. There was also the question of risk, where the one unsuccessful procedure they have had out of the 63 they have done was at 16 weeks pregnant. So by giving it a few more days, perhaps the complete panel of results from the amniocentesis would give some conclusive information, as well as having certain structures available from an approach perspective in the surgery process. We left more confused about our decision, but more informed about the risks. We had rescheduled the procedure for Thurs.

Today I got a call from the doctor that would perform the procedure. He said they've had meetings with a number of experts and that another Dr. wanted to do an ultrasound to see for himself. This Dr. is one of the directors of the department, and he felt there may be some more time, if not more options for us. We saw him today, and he believes that baby B may have a chance of survival at least for a few weeks, and maybe until birth or beyond. However, there are still a lot of factors that need to be determined, which means more testing. I have an MRI scheduled for the babies tomorrow, followed by an echo of the babies hearts. Fri. I will have another ultrasound to determine if the cystic hygroma and hydrops has increased. The ultrasound today did not show increase in either, so that's a good sign but not enough to sway the Dr. in one decision or another. The procedure was again put off until we get more results.

Tomorrow should be a long day, but possibly one that can provide some clarity. I am putting all my energy into the hope that both of these babies have the best possible chance at life. Thank you for all your hopes and prayers during this. I'll try to update this tomorrow or Fri. when I have more information.

Amnio results

I received the results from my OB/GYN at my regularly scheduled appointment. She happened to have received the fax before anyone could contact my Perinatologist, who was out of the office. I had expected to hear from someone in the afternoon, but wasn't expecting my OB to be the one with the information. So when she asked me how I was feeling, I told her the truth--I am mentally screwed up right now. She assumed I had heared the results. Nope, just the state of mind I've been in, but hey let's hear those results. Well, she had never actually seen these type of results. One page for twin A showed normal chromosomes, and listed the baby as female. Flip to the next page for twin B and it was blank, except for a disclaimer reading that only 1% of analysis comes back inconclusive, which of course was the case for twin B.

After a few phone calls to the genetics lab and the Peri office, we discovered that they couldn't produce the results for twin B because these types of results just don't happen. It's the assumption that identical twins are identical--if one twin is "normal" then in theory the other twin is as well. This isn't the case here, so a human had to re-evaluate the results. During cell division, twin A was spared the "bad" chromosome resulting in an unequal cell division. Twin B is diagnosed with Turner's Syndrome. It's only associated with females. The abnormality itself is quite unnoticeable in society, and most women go on to lead normal lives. In this case, the syndrome is presenting so severely that it's the cystic hygroma and fluid buildup around her heart, lungs and stomach (hydrops) that it's crushing her internal organs. If the cystic hygroma were smaller, and little to no hydrops were present, the odds are that she would survive. However, I've been told it's only a matter of time that the continual increase in pressure will shut down her heart.

The Peri called me immediately following my appointment with my OB, and informed me that he had already been on the phone with Cincinnati regarding my results. Typical Turner's Syndrome diagnosis is reviewed by an ethics committee to determine termination status. In this case, all specialists agree that it's not an ethical issue (medically speaking) and that my best bet, and twin A's best chance at survival, is to get to Cincinnati ASAP. Cincinnati called me shortly after the conversation with my Peri and had me registered at their hospital with an ultrasound scheduled for this Mon. These conversations all took place driving from the OB office to the freeway, which is about a 10 minute drive.

It's a lot to digest and I find that I can't breathe if I have to think about it too much. I do know that the specialist there will look at specifics of the ultrasounds and make his own determination. I know if I were rational and not thinking from a maternal pregnant, oh god please just save this baby and give me a miracle point of view, I would see this as others do. Maybe sleep will give me some perspective. Right now I just don't know how I will ever recover from making an impossible decision. The odds of twin B dying in utero is great, the odds of survival to birth is low. The odds of twin A having side effects (cerebal palsy or brain defect, etc.) if twin B dies in utero is high, very high. The odds that I will have a "normal" pregnancy after going through the procedure to do ablation on twin B is very high. Still with all this information and all the doctors and specialists on the same page in this, I have a huge moral hurdle that I can't even fathom I am faced with.