Saturday, November 17, 2012

Prematurity Awareness Day 2012 - We are 1 in 8

Sharing our story again.

Addison and Blake
Born - Feb 14 2011 @ 1:10 pm & 1:11 pm
Weight - 1 lb 10 ounces (Addison) and 1 lb 14 ounces (Blake)
Spent - 105 (Blake) and 153 (Addison) days in the NICU

How did it happen?
I don't have an honest answer to that.

We tried for 4 long years to conceive before turning to IVF. I started out with 9 eggs, only 7 fertilized and then each day we lost 1-2 of those now embryos. By day 5 (the day of our transfer) we had 4 embryos (2 AA's and 2 AB's...talking quality of embryos, AA being the best of the best). We were given a choice that day, put back 1 embryo or put back 2. The remaining would be harvested for another 2 days and then frozen, if they made it to day 7. We opted to put back our best 2, the remaining two did no make it to freeze.

Two weeks later I was seeing double lines on several a home pregnancy tests. And had my first beta quant & Progesterone (blood draw to check hormone levels) and my second which showed good doubling time. Four weeks after that I was laying on the exam table with Jake by my side and looking at not one but two beautiful flickers on the screen. The RE mentioned at that time something about a SCH (sub-chronic hemotoma - Gathering of blood between the membranes of the placenta and the uterus), said it was something we would just watch and that it may just go away on its own. We had another ultrasound two weeks after that to confirm we were still on track and then our Infertility Specialist (otherwise known and a Reproductive Endocrinologist) graduated us and sent us on our way to our first OB appt at 10 weeks.

One November day, just shortly after we entered the second trimester (that place where you take a breath and think "this is it, we have entered the 'safe zone'"), and after our now 3rd ultrasound (where no mention of the SCH even exhisted, so in my mind thinking it had resolved) worst nightmare happened. I was at work, on phone call when I felt something. Something wrong. A felling like I had just gotten my period. But wait I'm pregnant this shouldn't be happening. I ran to the restroom and my heart sank. It was happening... I was terrified. God had given us these two babies and now he was taking one (or both) of them away. My mind was racing. My boss got ahold of Jake while a coworker drove me to the closest ER, where we waited in agony. Finally after numerous tests and yet another ultrasound, doctor's confirmed that I had a UTI (common in pregnancy, but my first EVER) the SCH was gone and was likely the culprit of the bleeding BUT we still had two beautiful babies growing and hearts beating. I was told to follow up in three days with my OB and go from there. Relief.

At this point we also switched OB's because the first OB we chose did not feel it was important to see me and follow up on the bleeding, rather she insisted I just keep my next scheduled appt - which was several weeks out. The next OB we went to had me in his office (as a new patient) within a few days to make sure everything was still on track. We also made the decision at this time that I would quit my job (atleast for the remainder of the pregnancy and potentially the first year), I was a miserable pregnant person who couldn't sleep, barely ate, and was constantly sick. That paired with being put on modified bed rest as a result of the bleed episode, sealed the deal.

We had a few weeks of pure bliss. We were looking forward to Christmas with our families, and planning for a 4-D ultrasound (and hopefully gender reveal) just before Christmas Day. We spent our evenings curled up narrowing down names and counting down days. But it wouldn't be long before fear crept in again. At exactly 18 weeks, I got a phone call from the OB saying that one of the blood tests done to check for birth defects had come back high. He assured me this was not uncommon with twin pregnancies and often was simply a false positive but to be safe he was scheduling me with the Center for Advance Fetal Care, (high risk-Maternal Fetal Medicine). He was able to work his magic and have us seen at the Center for Advance Fetal Care on Dec 23 (just before Christmas Eve). I was extremely nervous but excited at the same time. I prayed everything would be ok and that we would have the chance to see if it would be Team Pink or Team Blue.

Things did turn out well that day, there was nothing visible on ultrasound to indicate a birth defect in either baby, even with our family history we were at a low risk for any defects, and the only other option was Amnio (which we both agreed to decline, a personal choice, but in our minds knowing would not change the outcome, nor would it change what we would do with the information). We also found out that day that we were having a GIRL and a BOY. I'll never forget Jake holding his breath from the time the tech announced "Baby A is a girl" until she announced "Baby B is a boy". She asked if we picked names and without a second thought we said "Addison and Blake."

We shared the news with our parents right away, and then told the rest of our family on Christmas. Everyone was excited and overjoyed. Life was good again. For a few weeks that is.

Week 20 - I remember rolling over in bed and feeling like I had wet myself. Silly babies must be sitting on my bladder. But these little accidents kept happening, with more frequency, even if I my bladder was empty. Then I had some spotting again so off to Labor and Delivery we went to be checked out. I was discharged and told everything was fine. A few more days went by and it just got worse. The OB sent us back in to L & D and this time someone listened to my complaints. There was still no for sure indicator that anything was "wrong" but she did an ultrasound to check fluid levels, found Baby A (Addison)'s a little low but nothing alarming. Sent me home and told me to call Center for Advanced Fetal Care first thing in the morning and have another ultrasound done that day to check fluid levels again.

This was the day that flipped our world upside down. We went in to Center for Advanced Fetal Care, they did our ultrasound and I could see it in her face that something was wrong. She measured fluid on Addison and it was much lower then the night before. The tech left the room and came back after what seemed like eternity with the doctor. From that point things got blurry. I heard words "Micrognathia", "VSD & ASD - heart defects", "Very low fluid", "Risk for infection", and then one final blow "Termination". At the sound of that word, Jake stood up and fought back. (From an older blog post recounting the details...) The first words out of the Peri's mouth was "consider termination of twin A, it would be better for twin B and then we could test twin A for genetic disorders." And as Jake put it, "Hell no. Our little girl is not some statistic or science fair project. She is a living human being, if she decides to give up then so be it, but right now today she has a heartbeat and is alive. Whatever comes our way, she is ours." I know now my water broke with Addison, it was never continuous, the doctors speculate that when she was resting she was laying on the hole and when she'd move I'd experience the leaking, she'd stop moving when she ran out of fluid until it rebuilt. There were ultrasounds that could support that theory. We'll never know for sure.

I was admitted to the hospital that day for a round of antibiotics. They called in the Neo for a consult, and he explained what happened to babies born at 20 or 21 weeks. I less then politely asked him to leave. I DID NOT want to be told that if my babies were born in the next few days (which they were all sure they would be) there was nothing they could do. They would wrap them in a blanket and keep them warm, and just allow them to slip from this earth. The attending OB said that with no fluid Addison could be born "frozen", should we make it that far, and suffer long term effects. My OB shrugged it off and said "It could happen but realistically you won't be pregnant long enough for that to be a real issue, it's treatable." I got to come home after the antibiotics because there was nothing they could do. I'd continue to see my OB and the MFM weekly until 24 weeks when I'd get steroid shots and they would then reccomend that I remain on hospital bedrest.

I came back for the steroid shots, stayed the weekend until I had completed a full course of those, and then after much debate and thought and discussion, decided I would finish the remainder of my pregnancy at home on bedrest. It wasn't what my doctors "wanted" or "reccomended" but it was what Jake and I both felt was right in our hearts. The MFM even said to us, while he could not give us the ok to leave, he had to agree with what our reasons were. Either at home or at the hospital I was at risk for infection, infection would send me into labor, or worse. However I would be A LOT more likely to contract an infection in the hospital that at home in my usual environment. They would do nothing more for me at the hospital then I couldn't do for myself at home, with the exception of putting the babies on the monitor (which at this point I could feel their movement enough to know if something was up) - temps twice a day and no leaving the bed except for bathroom breaks and a 5 minute shower. I still went to doctor's appointments twice a week for monitoring and each time they talked to me about staying.

I have no way of really explaining this, honestly, but at the time I really felt like it was THE BEST option for US. In my mind, if I was at home, I would stay pregnant longer. (Denial.) If I was at home, there would be "time" for Jake to make it to the hospital or to me. (Fear that I'd be alone. Fear that he'd miss the birth of his babies.) I really honestly believed that the stress of being alone in the hospital day in and day out while life went on without me, would send me in to labor sooner rather then later. At home I stayed in bed and played by the rules. I counted down the time until Jake was home and I could have 5 minutes in the shower. My grandmother stayed with me a few days a week to keep me company. Jake packed meals for me in a lunchbox at the bedside. He washed and changed bed sheets every day. He cooked, shopped and cleaned. I began researching and reaching out to other people on bedrest or with preemies. I found some amazing ladies on who saw me through my darkest days. Looking back would I do it differently? I can't say. Would I do it the same should it happen again? I don't know. We did what worked at the time.

And then exactly six weeks after it all began. Exactly 26 weeks pregnant, I woke up feeling odd. Just off. I couldn't place my finger on it but I ached all over. I begged Jake to stay put and not go to work. Convinced myself if I just got a shower I'd feel better. I couldn't stand in the shower, it hurt too much. Jake helped me dress and off to the hospital we went. I knew in my heart that day was THE DAY. We were going to meet our babies. Before we left the house, I had no fever...when we got to the hospital (20 minute drive) I spiked a temp. They couldn't pick up contractions on the monitor at first but Addison's heartbeat was doing some funky things. My OB came in checked me out and said "Book the OR." He consulted the MFM who agreed that it was time. And before I knew it they were here.

I remember that they didn't cry. I remember that they briefly showed me Addison as they whisked her to the NICU, but sadly to this day I do not remember what she looked like. I remember a blur. Jake got to see Blake before he went to the NICU. All he told me was that he was perfect. I remember being delusional, excited, happy, and absolutely terrified. Honestly for the first few hours after they were born I was in some major shock and denial. I knew what could happen, but until during our very brief visit to the NICU (while on a gurney in route to my room on the post pardum floor) where we were asked if it was our wish to Baptize Addison, and informed us that now would be the time, and until Dr. K walked into my room later that night to give me the grim outlook, it really hadn't hit me. It was like I was going to wake up from this bad dream and still be pregnant or have two full term babies.

Our daughter was baptized the the hospital Chaplin, surrounded by machines and wires, doctor's and nurses. My Labor & Delivery nurses bore witness and held hands with Jake and I as the Chaplin prayed. It was nothing like I envisioned. I had to wait 5 days to hold our son, and close to a month to hold our daughter. We cried many many tears. Our hearts ached like never before. For months we lived in fear that the phone would ring bearing bad news. I admit this today, we feared we would be planning a funeral for one if not both of our children before they even had a chance to meet the world.

Every year 1 in 8 babies is born too soon. Many of those babies loose their battle long before it's their time. (Per the March of Dimes, every 30 seconds a preemie dies.) I know first hand just a fraction of these families who have lossed their preemie. That's a heartache no parent should EVER have to endure! Prematurity is a cruel thing. It robs parents of so much and can lead to a lifetime of delays, special medical care and various other things for the children. I hope all of our friends and family will do their part today and wear the color purple, to honor, remember and support these preemies and their families.

For more information on Prematurity or to make a donation to the March of Dimes to help find a way to prevent premature births and fuel more advancements to help these preemies over come the obstacles that stand in their way please visit today.

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