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.