22 weeks 1 day= Up in the air

Gestational Age: 22 w 1 d
Symptoms: super large belly, belly button opening squished to just a slit, stretch marks on the BB but none on the belly yet (yah), contractions, baby movements, still peeing every 2-3 hrs at night
Prayer Requests: a miracle. Gizmo's heart valve to open up and the fluid around her heart to disappear, for her left ventricle to receive blood that allows takes away the calcification and that it beats regularly. Please protect Astro that her health is not endangered by her identifical twin's health. For our docs to have wisdom and for them to be knowledgeable in the areas we need.

So another visit to the cardiologist. I thought this one would be faster but it was still over 90 minutes of just scanning. 90 minutes of scanning one baby's heart. The room was hot and I was trying so hard not to get restless and fidget. I tried to look at the screen but it is hard to figure anything out. I did smile when I got glimpses of arms or legs or her sweet face. And she was squirming around in there which made me smile. I felt a lot of kicks and moves, I guess the ultrasound wand got them all worked up.

Then the Dr. sat down with us after that loooong scan. And our other specialist came in and sat down in the middle of the meeting. Dr. S, the cardiologist, said that her heart looks the same, that she does appear to have aortic atresia and that her left ventricle is enlarged and does not seem to be beating properly. He says overall her heart looks bigger (and not just cause she's getting bigger) but he says it looks to him like there's less fluid around the heart (AMEN, that's what I was praying for, my good little girl).

There's some docs from San Diego here and they're having a docs get together so he's going to present our case to them and get their opinion. Whether surgery is even an option. She may be born too small because she's a triplet and will be a preemie. If there is a shot, then Scott and I will have to go up to San Diego and be prepared to stay there for a while. We were a little shocked when Dr. O (our specialist) said he'd send us up there at 25-26 weeks (up that's 3-4 weeks from now)...whoa. That's a little shocking to think of. I'm okay but I just feel bad for Scott. I'm set to leave work but how is he going to keep working. If the surgeries are an option, we also may have to stay there for about 6 months after the delivery

This time they brought up the idea of termination as an option. They said they just have to lay out the options. I don't know how they get the numbers that they use. Looking online, it said that 20% of babies die while waiting for a transplant but the doc quoted us almost 50%. The online journal said that about 40% of identical twins suffered brain damage if their twin died in utero but the doc from last week quoted us 60%. And this week, Dr. O told us that there's a 30-40% chance that our identical twin "Astro" could die as well if Gizmo passes away.

I told them that I was just not comfortable with the idea of terminating. I said, I of course would have to know it was an option as things change or our options change but I had to put it to them so they knew. Last week, while we were being prayed for, I just felt like God created all these girls. He formed every hair on their head and I just kept thinking "I can't harm a single hair on their heads." I told God that. They're his creations, they're his children.

The doctor brought up yet another option. If surgery is not an option, we could choose to stay here in Hawaii and deliver here although they don't have the facilities to deal with Gizmo's heart problems. All they would do is provide care for as long as she could survive. He said that he had families who were against termination who chose that option. I was relieved to hear that although much later it struck me that these were probably singleton pregnancies, in my case there's risk to the other two girls involved. I tried to pin down the cardiologist for his estimate at her chance of survival to delivery. he hemmed and hawed for a while and said he was just guessing that she had a 60% of survival to delivery.

So now we just wait to hear what the san diego doctors say.

I still marvel at how things went from being so great and blissful to just being an emotional nightmare. Logically, I wonder how we would handle the expenses of moving to a new state for a good part of a year, finding a place, renting, we would need a car, a mattress, still pay mortgage at our hawaii home, need someone to stay at our home to take care of it and take care of our dog, taking care of 2 of the babies once they come out of the hospital while the Gizmo is still receiving medical care, and I'm scared to ask how much insurance will cover for medical costs especially with both of us not working. Thankfully, I really believe Scott's job will work with us as much as they can but, last night, he brought up getting a job at a fast food restaurant that our friends have in California. Emotionally, I just have no idea what choices we'll be asked to make and I have no idea how we'll make them. Believe me, it's a despairing thought but I have to push it away for now. God got us this far, he's in for the entire journey. Everything sounds so scary but he hasn't forsaken us, he's held his promises.

I miss the days when a triplet pregnancy was the biggest of my worries. I have my good days and bad days. Last week, I just came home from work and just lay down all night, trying to let my body recuperate as much as possible before my next day at work. This week, I feel a little stronger although last night, I was having a lot of contractions. I only feel them because my bladder gets squished and I have to fight the urge to pee. I'm at 22 weeks...unbelievable...I would be so proud of myself and my body for standing up pretty well. I feel like we could go really long with this pregnancy....if this was just a regular triplet pregnancy.

I've started a cocoa butter regimen, three times a day. I don't know if it will work but at least my skin is super moisturized and smooth. I have this area on my left upper abdomen which is so painful. I thought it was the skin but now I think it's the muscle. It feels like a torn muscle. I looked it up....it's just muscle pain from it being stretched and there's nothing you can do...but I find myself subconsciously rubbing it all day long. For the last week, I was only feeling movement/kicks in one area. The top so I figured it's Slugger. But yesterday riled them up and I feel them on the top, my right side, and down below (which feels weird and I lovingly tell them to stop that when I feel that one).

I'm 10 weeks away from the average delivery date for triplets, 6 weeks away from the critical 28 week mark. Please let the time just fly by with my baby girls chugging along. Lord, these are your girls, teach me how you want them raised.

20 weeks 6 days-Finding Hope in the aftermath

I wanted to post this right after going through the day we found out about the heart problems. The next day we woke up in a much better place and I didn't want to leave my blog hanging on the emotions of that first critical day. But it took so long to write the details, I couldn't expand on where we are now.

The following days I woke up, still having moments when I just cry, thinking of my little girl. But also realizing that I have to go forward under the assumption that God is going to work miracles. Yes, the odds are stacked against us. But as long as there's the option, the possibility that our babies come out alive and healthy, then that will be the one I cling to.

I thought about us walking into the cardiologist appointment. Scott and I both said afterward that it hit us hard because we walked in so clueless and hopeful, we felt blindsided. But would the news have been easier to take if we had expecting the worse. I don't think so. So, while, I first felt like I was just preparing myself in case the worst happens, I don't think there's any way to prepare for that. Nothing will make it hurt less or pass easier. So, let me cling to the hope that is my God. Let me rejoice in her life now. Let me be thankful for each day I have with her.

As if God nodded alongside with me, the next day, the babies were so unbelievably active. Gizmo (Baby B) is on the right side and I felt kicks on the lower right side all day. It was the lower side so I knew it wasn't the fraternal who sits above her. I still have Scott feel my stomach while we watch TV hoping he can catch an errant twitch or kick. Finally, that night, she seemed real active and I found that if I pushed gently on my stomach, she would answer with a firm kick. I tried it a few times and each time I was rewarded with a kick. So I asked Scott for his hand, pressed it on my stomach and sure enough, he felt it. I was so happy, I said "that's her." Meet your daughter.

We had a regular visit with my OB. She brought up that the cardiologist probably asked us about terminating the pregnancy for that baby. He hadn't but it's not even an option for us. She did bring up the dangers if Gizmo passes away in the next few weeks. The body could try to reject it which would mean preterm labor for the other two babies. Or an infection could develop that could endanger the other two babies. I'm at 21 weeks tomorrow, and we need to get well past 28 weeks to get out of that danger zone. She also brought us some hope. She said you just never know with babies. They're so small at this point, as they get bigger, the doctors may be able to see more things clearer with their hearts. It goes both ways. Babies they don't think will make it do, and babies they think are in the clear don't always. So, I'm praying that the next visit, the heart will be a little bigger and give us some hope-filled news.

I never want to say I'm naive. I know how serious things are but I can't survive this unless I just believe. So I believe. I had to think about the worst case scenario. What would happen if we lost Gizmo and then lost the other two. All this, the years of waiting and doctor's visit. The shots, the blood tests, the awkward examinations. This pregnancy has been tough. Would I wish it just had never had been? And the answer is no. I am so thankful. I prayed for this, I've been able to walk this path. I think it's such a huge difference that I can feel them move. I feel like I've met them. I love them already. Every second is a blessing and an answer to my prayers.

Tomorrow we meet with a new doc who is filling in for our neonatal specialist. Next week is our cardiologist appt.

Prayer Requests:
For the aortic valve to be opened up
For the fluid around our heart to diminish
FOR NO MORE FLUID accumulating in her body
For her heart to be support her active body
For Astro (Baby A) to be able to grow and keep up without putting more stress on her sister
For Slugger (Baby C) to continue her growth and development and to watch over her sister
For God to help us through this year, we must stand on Him

20 weeks 3 days...my heart is breaking

20 weeks 3 days

Yesterday, my sister suffered a second stroke in a span of 6 weeks. I received her text messages when I was done with work. It was an emotional night, a visit to the ER. A mild stroke considering but still very serious.

Today, we had to focus on our babies as Scott and I had a visit with a pediatric cardiologist to look at some things about Baby B's heart that had alarmed our neonatal specialist. Scott and I really walked in with naivety. Our doc said he thought he saw a hole in the heart and one side of the heart not beating as strong. Well, she's the biggest and by far the most active baby. I heard that holes in the heart sometimes close on their own, or I'm sure they can fix it somehow. We were not even fazed and breezed into the appointment.

The ultrasound tech took us into a dim room and scanned my babies for over 90 minutes. It was so quiet I fell asleep for a little bit. She took tons of pictures and videos without saying a word and when she finished, she said the doc would review it and then come in himself. So, we spent another half hour by ourselves in the room before the cardiologist came in. Dr. S. He introduced us ourselves and then said he wanted to do some scanning himself. So, he spent another 45 minutes in silence scanning Baby B. Then he said "I'm done. I'm going to take you in the next room and talk to you." Ok.

We went to the next room and he showed us a model of a heart and explained that fetal hearts are different but he would show us how it works in the adult heart.

So blood returns from the body lacking oxygen on the right side (in blue). The right side of the heart pumps the blood to the lungs to pick up oxygen and it returns to the left side of the heart. The left side of the heart then pumps the blood out through a valve into the aorta, a huge vessel that will distribute the oxygen-rich blood to all parts of the body.

He said he sees several serious problems with Baby B, whom we have nicknamed "Gizmo",'s heart. The left ventricle (right half of the picture above) is enlarged and is brighter than usual on the ultrasound, which may mean that it has a build-up of scar tissue. The left ventricle also doesn't seem to be beating regularly or very strong. The valve between the left atrium and left ventricle looks damaged and he sees some blood actually going backwards. He said he took a long time looking at the aortic valve, the opening that lets blood out of the left ventricle so it can exit the heart into the aorta. He says it's really small so he tried to look from really different angles but he wasn't able to see any blood going through. He fears that the aorta might be completely closed, not letting any blood out of the left side of the heart exit into the aorta.

I just kept nodding, trying to memorize every word he was saying so I could understand exactly what was happening. My mind was racing as I memorized the names of the heart parts as he was pointing to them.

He took a deep breath and then said it doesn't look good. What could happen is she could pass away in utero. She could survive until delivery and be born and then pass away shortly after. He said that if she did make it far enough to be near delivery, it would have to be on the mainland where they could be prepared. If she survived long enough, they could operate on her or if the heart was still too damaged, try to get her on the list for a heart transplant. He said we needed to start thinking about who we might be able to stay with on the west coast that would be in a large city, and he could then match us up with a hospital that was equipped to do transplants and heart surgeries. He recommended staying with family because we would be there for a while. He'd have to talk to our neonatal specialist about when to send us up, because they would have to play it safe. They might have to have us go up to the mainland as early as 28-30 weeks. It might be a month of waiting before delivery, and then of course, however long treatment would be. He said to have a list of cities we might prefer by our next vist.

Again, I'm still nodding in shock. Then he said, "there's the troubling sign that there's fluid around her heart which tells me that she's already experienced some heart failure." Even my numbness couldn't withstand that. I looked at Scott and said "I think I'm going to cry." And then I did. Loud, ugly sobs. Even now as I type this, they're wrenching out of me. My baby. my baby girl. You mean, she's dying. My baby girl is dying.
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Ok, I'm back. I had to leave for a little bit. It's still a little raw. It's hard to have to relive it, but I want to put it down. I started this blog to journal our journey to becoming a family and this is it...the good and the bad.

The poor doctor. He just met us and he had to deliver us the harshest news, probably not a real fun job. He said he would talk to our neonatal specialist...which, if this isn't just a cascade of the devil's attacks is out right now. Our neonatal specialist is out because he had an medical emergency himself and is in the hospital. We're to come back to see the cardiologist in another week and half.
I asked him how come she is doing so well if basicallly she's only using half a heart. She's always been the biggest, always days ahead. She's the strongest and most active. I feel more connected to her because she's the one I usually feel moving and kicking. It makes me smile and I talk to her and rub my belly in encouragement. he says that the blood entering her right atrium and ventricle is coming from the placenta so it's oxygen-rich with my oxygen.
a Fetal Heart

The oxygen rich blood from the placenta goes to the right side of the heart but only a little bit goes to the lungs. There's an opening to the right side of the heart so that the heart can pump the blood to the rest of the body. I think this means that our baby's right side of the heart is doing all the work. He says some of that blood may not be getting to the vessels on the outside of the heart which is why there's scar tissue building up on the left ventricle.

The day was a miserable mess. I couldn't leave the little room, and the doctor kindly told us to stay in there as long as we wanted. I just sobbed for 30 minutes and Scott just held me. my only thought was, how do I get out of here and get home without having anyone see me. When I pulled it together, we started to leave but I had to do a bathroom stop first. When I walked in, I saw myself in the mirrow and saw my belly bulging against my T-shirt and a fresh new wave of pain washed over me and I started sobbing again. All this, all this is for us to have three babies...NOT two....THREE. Right now my stomach looks like a swollen beach ball because there's three babies in there.

We went home and I mourned my baby. Scott and I were sitting on the couch during a quiet moment and I felt her kick me hard and I started crying again. "She kicked me" I told Scott. How can my little girl be so alive and so active? It's heartbreaking because she doesn't know anything is wrong. She doesn't know her heart is struggling to keep up with her. How can I celebrate her kicks and movement when there's this impending gloom. I never really thought about how parents of children with terminal illnesses do it. You hope for the best, but how do you enjoy any part of the present when you're wondering how long the present will last. How can I make it another 3 months of panic and fear. Scott reminded me that we have to pray for a miracle. Forget heart surgeries and making it to delivery. We need complete healing by God's hand.

The first day was rough.

20 weeks and feeling it

Gestation: 20 weeks
Weight: 187.5
Appearance: Belly is big. Stretch marks on boobs only.
Symptoms: Nausea pretty much has been gone since 16 weeks but I still get occasional feelings of nausea that I can usually ignore. The discomfort has definitely began. The stomach muscles have just stretched to a point of discomfort and my stomach feels hard. It tenses up and contracts and my bladder is pinched to the size of a penny, giving me the overwhelming urgency to go pee even when I don't really have to. I try to sit more but my back hurts. I alternate between trying to stretch out my stomach and trying to stretch out my back.

My stomach just feels hard. It's freaky to feel. Sleeping is tough and some nights my body just hurts more. One night I was on crying out loud whenever I had to shift my weight. Then some days I am perfectly good and my abdomen and back feel more relaxed.
Countdown: 8 weeks until viability. 13 weeks until average birth arrival.

I haven't blogged in a while but I'm keeping my computer at work so I can't blog at home. And we have a shortage of computers at work currently so I just haven't been able to grab time to blog.

Last week, we went for our 19 week ultrasound with the specialist. It was so reassuring to see that Baby A is keeping up with growth although still very behind Baby B. And still no sign of that growth on Baby A's spine that appeared a month ago. Dr. said their levels are a little low but nothing alarming. He spent a lot of time with Baby B's heart and I just knew something was up. He took three times the number of pictures compared to the other babies. At the end, he went over the results. Baby B does seem to have some heart problems. That thick nuchal fold we saw at 12 weeks can indicate chromosomal disorders or heart problems. In this case, it looks like heart problems. Dr. pointed out that one side of the heart didn't seem to be beating as strong as the other side and there was a hole in the heart. A cardiologist called us and we're going in for an echo of all their hearts this upcoming week. But Dr. was encouraged that Baby B is growing strong, she's the biggest still of all the babies and very very active. And so we're so happy that our babies are going strong.

Thanks to Scott's constant joking about looking for hidden boy parts, we received our third set of crotch close-ups which bring the total to nine pictures total. Enough. I believe it. They're all girls.

I'm at work. The doc said I was doing good and my cervix was measuring normal. I can continue to work until my body starts to object and he also told me warning signs that we should look for that might indicate danger: increased vaginal discharge, a mucous plug, rhythmic contractions, bleeding. So I'm on my last week of work but I told them to schedule me in for next week and I'll play it by ear. Today, my body is hurting and I wish I was at home so I could lie down. But summer has arrived, and this past weekend, I was just hot and miserable at home. So, I'm okay with trying to stick it out here at work.

I feel a lot more movement and little jabs. Imagine a thick layer of rubber, like a whoopee cushion pulled tight. And then someone flicks it. That's what it feels like to me. Once I had my hand on my stomach and I was able to seriously feel a kick from the outside. Now when I lie down, I splay my hands over my stomach to try and catch any movement. I really want to get to a point that Scott can feel it so he can be a part of it. I feel a lot more connected to the babies now that I have little random reminders of their existence.

Yesterday, I asked him if he was not as excited to have babies. I told him it was because he didn't touch my belly like he used to. He sheepishly admitted that it felt weird now. It's true. My belly feels completely different. It's hard and the skin is pulled tight...so he made up for it by rubbing my stomach for fifteen minutes...I had to ask him to stop because it was making me nauseous=) He just can't win.

We are completely unprepared. I had illusions that we would have our house cleared out and unnecessary furniture rid of. Um, nothing has changed. Hopefully, when I stop working then we'll see some progress at home.