Shiloh

Our third son, Shiloh Bradford, was born still on November 14, 2013.

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This is an abbreviated story, and not the one I wanted to write….

Back in April when I found out we were expecting again, an avalanche of emotions rolled through: but I couldn’t wait for Sebastien to be a big brother!

My 8 week appointment was nerve wracking. And the PTSD kicked in, causing me to absolutely break down in my doctor’s office while going over my previous pregnancy history. Luckily we discovered there was only one baby, a perfect little gummy bear.

Two weeks later my MFM ordered blood work for one of the new free cell DNA tests, which checks for the 3 main trisonomies, and as a bonus can determine gender. Everything came back perfect and we were having another boy.

For once I was able to experience what a normal pregnancy was like. Pure bliss.

At my 18 week ultrasound though, the doctor couldn’t get a good look at the baby’s heart–it looked slightly displaced. The next week I saw a pediatric cardiologist for a fetal echo. The heart looked good, normal function, but it was pushed over to the side. We also discovered what looked like a cystic mass in the baby’s lower right lung. The cardiologist thought it to be either a congenital diaphragmatic hernia (CDH) or a congenital cystic adenoid malformation (CCAM). If it was as CDH, the doctor said it was a rare form, appearing on the right. But he couldn’t confirm what we were looking at.

My MFM confirmed 2 weeks later that it was indeed a CDH. Devastated. And so began the weekly appointments and the end of my normal pregnancy.

Since we would need to deliver at a specialty hospital we started looking at our options. UVA was the closest place to offer ECMO treatments, a sometimes standard procedure for CDH babies. So we went for a consult there—and unfortunately they didn’t really give us any information or treatment plans.

The next week my MFM confirmed that we were also dealing with Hydrops–another devastating blow. We realized then that the likelihood for this baby’s survival was rapidly dropping. We went ahead and did amniocentesis since many CDH babies have genetic issues. While there she also did an amnio reduction since I developed polyhydramnios.

We also decided to have our information sent to CHOP, one of the major facilities for dealing with CDH. They gave us zero hope or options. Basically we could have a compassionate birth anywhere, and just love the baby till he died, or we could try to save him even though he probably wouldn’t make it beyond a few days. We left there distraught.

At that point we decided we might as well have the baby at a place we wanted to be, rather than going to Philly or elsewhere. A friend then mentioned a doctor in Miami who is known for experimental fetal therapies. I immediately contacted him. He received all my records from UVA and CHOP. He wanted to try and knew exactly what procedures he’d do!!! We had our first glimmer of hope.

Off we went to Miami. They started the ultrasound. The baby’s heart had stopped. My heart dropped. I was 31.5 weeks along.

They said it had most likely stopped in the previous 48 hours–while we were traveling.

Around the corner we went to labor and delivery and the induction began. About 48 hours later, Shiloh Bradford was born, weighing 3lb 9 oz. We are getting a full autopsy, but who knows if we’ll learn what happened. The amnio results showed no issues.

I’m sad obviously. Sad that Sebastien has lost another brother. One thing keeps me ok–Shiloh has a big brother in Sam up there to take care of him. Definitely still hurts. Badly.

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School Pictures

Last year at this time we had Sebastien’s picture taken; and we did it again last week. Simply because of the time of year, I’m now calling these his Back to School pictures. I can’t believe how big my boy is getting!

One Year

Today marks one year that Samuel died.

How am I doing? I’m living. I think about him every day. I imagine how life would be with him, how he’d interact with Sebastien, what new things he’d be doing.

Unfortunately that’s not how things turned out, so I don’t dwell on it. Sebastien needs me here and present and living for him.

Sam’s garden is doing well.

Sebastien is doing well.

I went through my favorite pictures of Sam this week. Here they are.

Milk donation update

I previously mentioned donating my frozen breastmilk.

I went through the entire process to be screened. The milk bank provides everything: they send a packet with DNA swabs, with vials for a blood draw, with forms for my doctor and Sebastien’s doctor to complete. A lab contacted me and someone came to our house to draw the blood; they then test to ensure that I don’t have any diseases. The lab technician send that in while I send in the saliva swabs and send back the paperwork. Once everything has been checked out, a freezer kit arrives and I have to verify my freezer temperature settings.

After I became an approved donor, Prolacta asked to estimate how much milk I was sending in. Well, it’s hard to know an exact amount since I never wrote down the amounts. But I did count the bags: 180 bags, each containing between 3-8 ounces of milk. So, a lot. And this amount didn’t include the milk that I couldn’t send in: milk that wasn’t after the 90 day incubation period of the Rhogam shot, or any milk from when I was on antibiotics. And doesn’t include any of the tons of milk I simply tossed when we didn’t have the chest freezer yet and so had no room for it, or any of the milk I tossed when I learned about the lipase.

Right before the holidays my two freezer boxes arrived and I packed them full with my milk to send off.

I know some people are totally weirded out by milk donation. And I probably would be as well. But Samuel received Prolacta for a week; countless other babies will now get the same benefit.

Birth story: Part two

I wrote the second part of the story last year, immediately after finishing the first part. But I couldn’t publish it. It was still too fresh, too raw, too traumatic. Hell, it’s still traumatic to read it now. So here it is.
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Part 1
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Part 2: Delivery
The curtains up. I close my eyes, just focus on breathing and remaining calm. That’s all I can think about. Can’t think about what’s happening to my body behind the curtain, can’t think about the little boys about to be yanked into the world too soon, can’t think about the struggle they’re going to have. My mind stays blank, my body still, focusing on breathing in and out. It’s all I can do.

I hear them say something about Baby A being out, hear his weight called out: 2lb 1oz. That’s bigger than we thought! Sebastien! My heart is just brimming with love for him, hopeful. I try to get a glimpse of him as he’s taken, but his team has him in the back. Can’t see a thing. But I hear a tiny cry. He cried out! We didn’t expect to hear any cries at all. It’s such a tiny cry, so soft, the most beautiful thing I’ve ever heard. My Sebastien.

It’s not over. I clear my mind again. I know what’s coming, our Scrappy…how’s he going to do, what’s about to happen. I hear them talk about Baby B, see a rush of the second team go by. Can see even less this time. I hear 12 ounces. 12 ounces?! That cant be. He should be 14 ounces. I can’t watch, don’t know what’s happening, try to not think about it. Every once in a while I look over but just see a ton of people crowded around his bed. Alarms sound over and over, Sebastien’s team leaves him, everyone joins the fight for Samuel. More alarms, just breathe just breathe, but I can’t stop the tears. Tears of happiness for Sebastien, tears of uncertainty for Samuel. What’s happening over there? I’m crying, the anesthesiologist wipes away my tears. Scott’s trying to see what’s happening with Samuel — he’s told to go sit down. He joins me, wipes away my tears.

Meanwhile I feel all the tugging on my body as I’m sewn up. God I love drugs, can’t feel a thing.

Samuel’s doctor comes over. She tells us that they already had to rescusciate Samuel three times, that she’s done everything she can do, it’s time to let him go, time to say goodbye. Oh god no, no, no. We’ve come so far. We can’t lose him now. The tears won’t stop. Samuel, please don’t leave. She wraps him in a blanket and brings him over. Scott takes him. He’s so tiny, so tiny. Scott holds him in just one hand, I reach over, cradle his head, kiss him, tell him I love him, tell him to hang on, we’re not ready for goodbyes, please Samuel. The anesthesiologist leans down and whispers to me, “I’m so sorry.”

Samuel moves.

His chest moves.

Scott and I look at each other, what’s happening? Scott places his finger on his chest. “Sandi, he has a heartbeat.”

“What?!”

Oh Samuel, hang on my sweetheart, hang on. More kisses, more cradling. Our tiny, precious baby, our features in miniature.

Scott calls to one of the nurses — he’s moving, our baby’s chest is moving. “It’s a reflex.” We tell her to ask the doctor; the doctor says it’s a reflex from the drugs they gave him.

We keep talking to him, keep holding on. Samuel is still moving, still trying to breath, his heart is still beating. Scott asks me what I want to do: We can’t let him go, we have to give him a chance. We’ve fought so hard for him, I can’t lose him now. Can’t.

At some point, my doctor comes over, says that he’s sorry about ‘the little guy.’ What is he sorry for? Sam is still alive. Since he’s talking to me, I’m guessing that the perinatal fellow doc is finishing the sewing. I’m not paying attention to him — the focus is on Samuel. Fight Samuel.

Scott takes Samuel back over to the doctor and the team. Please try, please try. Our baby is breathing. He is alive. Do something!

The doctor takes him back. The doctors and nurses surround him, several are shaking their heads as they think the situation is hopeless. Samuel stabilizes. They were able to get an ET tube in him. He’s been stable ever since.

Sebastien’s wheeled out of the room to be taken to the NICU. My first glimpse of Sebastien, I only get to see him wheeled out, see him as he goes by in an incubator. Bye Sebastien, hang in there little buddy. Samuel’s wheeled out, Scott follows.

My stitching finishes, I’m wheeled to a recovery room. Will Scott know where to find me? I don’t even know where I am? He finds me in a little while, he’s been in the NICU with Sebastien. Sebastien’s doing great! So far they only have him on the CPAP at 21% oxygen — basically room air. All I know about Samuel is that he’s stabilized.

And now we begin the next long journey, the days of waiting.