Friday, April 25, 2014

Embry's Birth Story

If you follow me on Instagram you have seen many a pictures of my sweet little niece Embry Suzanne. She is 10 months older than Ford and they are becoming the cutest of friend (check out #embryandford on Insta for some cuteness overload!). Embry is the happiest, smartest, and silliest little creature and you would have never known that her parents were told she may suffer with lifelong handicaps the rest of her life at mere days old. Many of you prayed along side us without knowing the full story back in October 2012 when Embry was born.  Today my sister Cori is sharing her incredible journey to becoming a mother, you are not going to want to miss this one. 

-------------------------------------------------------------- 

I had the best pregnancy, until the end... I honestly had a dream pregnancy for the first 8 months. The worst morning sickness I had was a few times while brushing my teeth I felt a little gaggy. Yeah, kind of the exact opposite of Ruthie. I got pregnant literally the day I wanted to, at my 18 week check up my dreams came true when they said "it's a girl" and everything was Perfect with a capital P. I was due October 15 with our little girl we were naming Embry Suzanne and life was good! 



When August rolled around I started feeling an odd sensation in my left leg behind my knee. I noticed it throughout the day some but mainly at night when I would lay down and my husband would give me my nightly hour long foot massage. Yes you read that right, he's a keeper. When my leg was straight it just felt a little restless and tingly behind my knee. It's odd to describe. Five years ago I saw Matt Logelin on Oprah and became a follower of his blog. I even bought and read his book "Two Kisses for Maddy" when it came out a few years later. His wife died of a blood clot hours after she gave birth and I guess it always stuck with me. So I have no idea what made me think I had a blood clot in my leg, but I think being a "follower" of Matt and Maddy over the years, the whole blood clot thing kept coming to my mind. I'd google it every few days and it'd scare me to death. I decided to ask my doctor about it. At my 34 week appointment I brought in my notebook of questions and told my doctor I think I have a blood clot in my leg. She had me stand up and examined my legs. She reassured me I did not have a blood clot, that my left leg would be swollen and hot to the touch, etc. So I tried to relax about it over the next two weeks. 

At my 36 week check up I had a sonogram because I all the sudden started to measure big when I'd been measuring right on track beforehand (fundal height wise). I was then diagnosed with polyhydramnios, or excess amniotic fluid. Plus, we were told the baby was measuring 39 weeks....over 8 pounds with a month to go. We talked it over with my doctor and she strongly recommended we have a cesearian at 38 weeks. Not only because of the big baby, but it is dangerous to have your water break when you have polyhydramnios. She wanted Embry to be born in a controlled situation. To be honest, I was sad for about 30 seconds, but I had been really, really scared about labor and I talked to a bunch of friends who had c-sections and they reassured me that I'd be fine. It was surreal to think that Embry was going to be born in two weeks! As my doctor was finishing up with us, she asked if I had any more questions. I looked down at my notebook and had written "BLOOD CLOT?" but I didn't say anything since just two weeks before she had told me I was fine. I was almost embarrassed. So we scheduled our 37 week appointment for Monday September 24 and scheduled another sonogram with the perinatologist to try to get an accurate weight for the baby and check on the excess fluid. 

Monday September 24 came and we had a late afternoon appointment. We had no clue what we were in store for that day. So off I went with my husband to go see our baby girl and schedule our c-section for next week. A nurse came in and did the sonogram and wasn't very talkative. The perinatologist came, Dr. Reinhart, and was very somber. I can't remember exactly what he said, but he told us that our baby had hydrocephalus, fluid on the brain. He was very weary about giving us information about what that meant for her life outside of the womb, but that she had a large head, excess fluid on her brain and would need surgery after she was born, brain surgery. He also couldn't tell us what this meant for her life down the road. He thought there was a chance she could still be "normal", but he couldn't be certain. I was silent and my husband, Jacob, was asking a million questions. I remember feeling like I was in a fog, like I couldn't believe this was ME. He told us that when she was born she will be taken to the NICU and either transferred to Children's Hospital or possibly we could wait to have her transferred until I was released. We were given a lot of medical terms but I don't remember much of the specifics. 

We were released from Dr. Reinhart and he told us to go on down to my OB's office for my checkup. I will never forget our silent, zombie like walk down one floor in the hospital. The doctor's office made us schedule our c-section before we saw my doctor. It was so much less exciting then I thought it would be as I was picturing my baby being taken out of me and rushed into surgery. We scheduled the c-section for 1:00 pm on Monday October 1. I remember walking down the hall to my doctor's exam room and I saw her at the end and I just burst into tears. Dr. Reinhart had called downstairs and filled her in on everything going on with Embry. We went through the motions of the exam and when we finished up I glanced at my notebook. I had written blood clot AGAIN on my list. I was scared to bring it up, but I did. I told my doctor I just had a bad feeling I had a blood clot and would she please check me again. Again, she had me stand up and told me I looked fine, and that maybe it was a buried varicose vein. She said that if I wanted to I could go to an imagining center and have an ultrasound done just to rule it out for sure. I looked at my husband in the corner of the room and I could tell he did not want to go. We just found out our daughter was going to have major, major health issues and all he wanted to do was get home and start researching. Jacob had forgotten his phone at home and mine was slowly dying. At this point our families were both calling and texting so excited wanting to know if we had scheduled our c-section. Something in me knew I had to get an ultrasound done. 

At this point it was close to 5:00 pm so the normal place they would have sent me was closed, so we had to go about 4 miles away to a whole other hospital. They did the ultrasound on my leg and then we had to wait. I was still in shock from the news about our baby and my mind was spinning. My husband was using up the last of my cell phone battery doing research on hydrocephalus. We waited for over 30 minutes and we went to the front to ask if we could leave and have the doctor call us with results. The lady said that was fine, but she wanted to check with the sonographer first. When she came out and said, no actually you can't leave, I knew something was wrong. About five minutes later I got called to the front desk and was told that my OBGYN was on the phone. I remember hearing, "Cori, you need to get back to the hospital immediately". I remember asking if I could go home and get my stuff and she said no, that I had a blood clot in my leg and it could dislodge at any moment. I needed to get to the hospital and get on blood thinners immedately. I just remember hugging Jacob crying in the middle of the waiting room. Our families were still calling our phones and texting trying to get ahold of us and when we walked outside my dad called. I answered and immediately started bawling saying that I had a blood clot and was going to be hospitalized. 

I was checked into the hospital and was to live on the High Risk Maternity Ward for the remainder of my pregnancy. My parents drove to town that night from Austin and it was so relieving to see them. To say we had a lot going on is the understatement of the year. Is our baby going to be okay? Am I going to be okay? I still had a week of work left, and had a lot to do before leaving. When I was admitted to the hospital, Jacob did not have a job. He actually got and accepted his current jobs job offer Tuesday September 25. We spent the week finding out more about Embry's situation. Jacob went to Children's Hospital at one point to meet with the Children's Neurosurgeon group. We got some good news that it seemed like the fluid on her brain wasn't expanding, and that she had a great chance of living a normal life after surgery to place a shunt in her head. I spent the first two days on complete bed rest with no bathroom privileges until they got my blood thinning levels at a "therapeutic" level. I was on a Heparin drip my entire stay. I was assigned a hematologist, who I saw for a few months postpartum and will see again when I get pregnant. I also found out with lots of blood tests that I have a disorder called Factor Five Leiden, which is a mutation of one of the clotting factors in your blood and it makes you more likely to get blood clots. The week in the hospital was surreal in so many ways. We never expected anything to go wrong with my perfect pregnancy and our healthy baby. I sat many hours in the hospital wondering if I was going to die or if my baby was ever going to be normal. I remember the nurses telling me if I ever felt short of breath to press the emergency call button. I remember asking once if my blood clot did dislodge and I could page the nurses, would I still die and no one really answered me. Personally, I had a calming feeling about my unborn baby and felt like everything was going to be okay. I still cried about it and worried about it, but I tried not to "go there". My husband took it really, really hard. Everyone deals with things, especially bad news, differently and we were polar opposites. Jacob did as much research as possible and talked to any doctor who would listen. 













The day of Embry's birth was weird. I felt like she was safer inside of me and part of me wanted her to just stay in. That way we didn't have to deal with the NICU or face the fact that she would probably be taken from me and moved to Children's Hospital and have surgery. At 1:00 am the morning of I was taken off of the Heparin drip in preparations for the surgery. The doctors did a vertical incision on me instead of the "bikini cut" they do now. The vertical incision bleeds a lot less and since I had been on blood thinners for a week, they were worried about the amount of blood I would lose. Embry was born at 1:49 pm on Monday October 1 via c-section and was 9 pounds 12 ounces and 21 inches long. She stayed in the OR longer than we were warned she would and we were told she was stable. Nurses told me she had a lot of hair and they brought her over to me for a picture and a kiss. The NICU doctor that was assigned to Embry was in there and as the nurses were wheeling her to the NICU he told us that she looked good except for they couldn't confirm she had eyes. Yes, we were told that, while I was still cut open. Jacob was then rushed off to go follow Embry up to the NICU and be wheeled past our family on her way. 











The c-section itself was much different than I thought. I definitely felt a lot more than I ever imagined! I also threw up during the surgery, yuck. When they wheeled me into recovery I could barely stay awake. Jacob came down and showed me pictures of Embry and I just remember wanting to sleep. A few hours later when they were wheeling me to my recovery room, they wheeled my bed into the NICU to hold Embry for the first time. It was incredibly surreal to really meet MY baby. They let me hold her for about 5 minutes before I had to go to recovery. She came out not looking like the typical hydrocephalus patient and I remember being very thankful for that. That evening Embry had an ultrasound done on her head to measure the fluid on her brain. The results showed that the fluid was not increasing, which was a good thing. That evening I was in my room and Jacob was with Embry in the NICU and I got a phone call from him asking me what kind of formula we wanted to start her on, Infamil or Similac? I said NONE! (I was pumping at that moment!) Embry's NICU doctor was insistent that in order to fatten her up and get her as big as possibly before her impending surgery, feeding her formula every 3 hours was key. That night at 1:00 am I was put back on the Heparin drip to continue thinning my blood. 














The second week in the hospital was much different than my first. Tuesday was the most painful day of my life. I definitely told Jacob Embry was going to be an only child. Tuesday mid-morning I was able to go visit her in the NICU. I had to get up, get into a wheelchair, take about a five minute ride across the hospital to the NICU and get settled in a chair there every three hours to try to breastfeed her. I truly think having to get up and about SO much right after my c-section was helpful in the long-run, I recovered very quickly. We of course were relieved to find out, she did in fact have two healthy eyes, and to this day cannot believe that the doctor would tell us something so crazy and unnecessary like that in the OR. Embry still was given formula after she tried to nurse every three hours. At one point they were up to giving her 2 oz per feeding, which is a ton for a brand new baby, but at this point we were still preparing for her to have major surgery any day and her NICU doctor was insistent that she get plumped up. Embry did really well in the NICU and by Wednesday they had removed her IV and put her in real clothes. We started putting a bug in the NICU doctor's ear that we wanted her released to the newborn nursery as it looked like her surgery wasn't needing to be immediate. She had a second ultrasound on her head on Thursday and when the results came back that the fluid had not increased on her brain, the NICU doctor released her to the newborn nursery only if we promised we'd follow up with the neurosurgeons group that next week. Thursday I also had my Heparin drip removed and started doing shots of the blood thinners in my stomach. Jacob and I each learned how to do my shots and would be doing them for the next three months, twice a day. Friday afternoon Embry and I were released from the hospital with plans to see her pediatrician and children's neurosurgeon the next week and follow up with my hematologist three weeks later. 









Embry was a great newborn and despite being pumped full of formula bottles in the hospital was a great breast feeder at home (and ironically after four months old refused a bottle all together). She was a great sleeper, loved to be swaddled and was just very content overall. We were scheduled to have an MRI done at Children's Hospital and then meet with a neurosurgeon on Thursday October 10. We woke up early and went to the hospital and Embry was great during the MRI. She slept through the whole thing. We were disappointed that we didn't get to see the doctor that Jacob had met with while I was in the hospital and still pregnant, but we saw one of his partners. A few hours later we were called into his office and I will never forget it. He bluntly told us that he didn't think Embry needed a shunt...the fluid on her brain wasn't increasing and it didn't seem like she technically had hydrocephalus. Instead, he said that he thought her brain looked small, or more specifically that she had cerebral atrophy. We were hit with a ton of bricks. He basically said that we need to prepare ourselves for her to have special needs because her brain was small. I remember sitting on the doctors couch crying and him handing me tissues. He said she may live an average life if we're lucky, but that I shouldn't treat her any different. We scheduled another, more in depth MRI for November 29 when Embry would be almost 2 months old. She would be sedated and they would be able to get a lot more images of her brain. October 10 was now tied with "worst day of our lives". I can't even describe what it's like to hear that your newborn baby's brain is not normal. 










Those next few weeks are hard to remember. It was a mix of the blurry newborn days and just not wanting to think about everything we were told about our precious baby. I remember finding it hard to believe. How could something be wrong with her? She did everything a newborn should. I tried my best to push any medical garbage out of my mind. I knew a lot of people who had babies in the fall of 2012 and I would look at their pictures of their healthy, "normal" babies and wonder why me? Why us? I just wanted my biggest problem to be the lack of sleep or the sore breastfeeding nipples, not if my baby would ever be able to read a book one day. On the other hand, my husband threw himself into research. He had started his career as a new attorney and was working so hard there, but would come home and research the human brain. He would sit and draw pictures of the brain to memorize the parts so that when we met with the doctors again he could ask the right questions. He ordered books that he read cover to cover, researched the best foods I should be eating for breastfeeding, etc...I remember telling him that Embry was going to show that doctor. She was going to be just fine....I hoped. 










We got advice during these weeks from a family friend who is a physician to see a neurologist along with following up with the neurosurgeons. (Neurosurgeons do surgery, while neurologists diagnose problems). We made an appointment with a pediatric neurologist for November 12. We had all of Embry's medical records sent over to him including her MRI images. I will never, ever forget the doctor walking into the office and saying- "I've reviewed everything...why are you here?" He explained that yes, she has a large head...in the 95%. But her height AND weight were also in the 95% so really, she was perfectly proportionate. Secondly, yes she did have some excess fluid on her brain, but it was most likely due to her head size and a NORMAL size brain in there. He reminded us that if every person on earth had an MRI done, there would be a lot of variations on fluid amounts because of the different sizes of heads. I remember I had asked the neurosurgeon this exact question on October 10 and he brushed me off. He did an exam on Embry and said that he saw nothing wrong at all. He thought she looked perfectly normal, she was tracking things, alert, and content. He said he'd be happy to follow up with us after her in depth MRI, but didn't expect to find anything had changed. It was one of the best days of our lives. 




We breathed much easier the next 2.5 weeks and felt we were able to enjoy Embry's first Thanksgiving. The day of her big MRI came and the poor baby couldn't eat or drink anything after 4:30 am, so she nursed at 3:00 am and we all got up to go to Children's Hospital at 6:00 am. I will never forget that from the time we woke her up until she got put under at 9:00 am, she never even fussed one time. She was honestly the perfect baby. She did great with the anesthesia and woke up no problem after the MRI. We were seen about an hour after she woke up by the original neurosurgeon that Jacob met with before Embry was born. It was the most amazing doctors appointment I've ever been to. Embry was given a completely clean bill of health. No hydrocephalus, which we knew early on because we knew the fluid was not increasing. NO cerebral atrophy! She was essentially "diagnosed" with benign macrocephalus, which breaks down to "harmless" "large head". In other words, girls got a big head...and guess what, her Mama and Daddy do too. Hats never seem to fit my "Fanning head" quite right and I specifically remember having the largest head in my senior English class when ordering graduation caps. Anyway, it was the news we had been dying to hear for over two months, since that awful day, September 24. 









About a week later we followed up with the neurologist who reviewed the in-depth MRI and agreed with the neurosurgeon and kept his initial opinion that Embry was just fine. I continued meeting with my hematologist through the beginning of January and kept up my twice daily blood thinning shots for three months postpartum. I will do the start back up on the shots when I get pregnant again and continue through the entire pregnancy and three months postpartum again. 

Since November 29, 2012 we've thoroughly loved being parents to our happy, smart, beautiful, feisty little girl and have tried to enjoy every single second. It's still amazing to us what we went through for two excruciating months. I still think about, what if we never had that final ultrasound done and Embry would have come out, been just fine (despite having a big head, but also being almost 10 pounds and 21 inches long it never would have raised any flags), and we would have been saved a ton of heartache. But, I know everything happens for a reason. We truly cherish the fact that we have a normal, healthy baby and will never, ever take it for granted. 










You can follow Cori on Instagram here

26 comments:

Theresa said...

Beautifully written. An emotional story that had me tearing up. Thank you for sharing, Cori! You have a beautiful, perfect little family :)

Lindsay @ Pursuit of Pink said...

Oh wow!!! I can't even imagine the roller coaster of emotions that your sister was on. I know when we were told that our child might have downs syndrome, we were completely shocked and dealt with a lot of the same emotions. This is a beautiful story, I certainly got teary eyed while reading it. Praise The Lord that Embry is perfectly fine. God is so good!

Liz said...

I remember praying for sweet baby Embry & Cori! So amazed at God's faithfulness! I mean look at that girl now! A cutie with a very proportionate head :) And let's be honest, her eyes are basically stunning!

Kristen said...

wowow. had me crying. I can't even fathom! God is so much greater than what any doctor can tell us! Praise the Lord she is a healthy baby girl! What a gift! Thanks for sharing!

Sarah Tucker said...

Wow, I think I just went on an emotional roller coaster then! Thank GOd that everything was okay and that Embry is just as happy and healthy as can be! And her momma, too!

Alyssa @ SimplyMcNamara said...

What an amazing story with such beautiful ending!! Such a beautiful girl as well!!!

Nilda said...

What an emotional rollercoaster! That's wonderful that Embry turned out to be okay.

Christelle said...

What a scary ride for two new parents!! Cori, I'm so glad you followed your gut instict and continued to press about the blood clot and all the concerns with baby Embry! She's so cute and beautiful! Thank you, Ruthie, for sharing your sister's story on your blog. Another great example of God's amazing miracle!

Bridget said...

Tears...check, goosebumps...check!! I'm so glad everything turned out just fine. You and your sister both have such unique birth stories...is your other sister worried at all? haha. I love seeing pics of Ford and Embry!!!

Megan C said...

I got chills reading that story. That is just a whirlwind no parent expects to go through. I am glad it all worked out. She is a beautiful, happy little girl!

Erika said...

What an ordeal! Thank goodness she is perfectly fine… even though she was just perfect from day one:)

Lindsey McMahon said...

Beautiful story and a beautiful family! I am sure it's my own pregnancy hormones making me extra tearful but thank you for sharing! May God bless you and your beautiful family.

XO, Jordan said...

What an incredibly beautiful story! I can't imagine how your sister and brother-in-law felt. Oh how scary. She's such a beautiful little girl :)

Kelly-Belly said...

What a lovely story. God bless you and your family.

Krystal R. said...

Such a beautiful story! And what a beautiful little girl Embry is as well!

Krystal R. said...

Such a beautiful story! And what a beautiful little girl Embry is as well!

Meghan said...

Praise Jesus! I can't even imagine the pain and anxiety endured in those few months! What an incredible story to share. Embry is just beautiful. What a strong Momma she has!!!

Megan Wolf said...

Thank you so much for sharing this story. Embry is a beautiful baby girl and I am so happy you had a happy ending!

Kristin said...

Ruthie, I remember texting with you the day Embry was born!!! What a terrifying and emotional journey. Embry is such a beautiful little girl and I am so happy everything turned out as it should. <3

Ann-Jennifer said...

What an incredible story! It's scary enough to have to worry about a blood clot let alone your baby's health. I'm so glad your sister had a happy outcome and Embry is a beautiful little girl!

Carolyn said...

OMG! What a story!! Embry is SO CUTE and I'm so glad that they ended up with happy news in the end!

Ashley @ ThisUnscriptedLife said...

What an amazing roller coaster story! I can't believe the doctors said the eye thing! Why would they say that??? I'm glad Embry is healthy and happy =)

Veronika said...

wow! what an inspiring story! I too found out early in my pregnancy that I have a genetic mutation that causes me to have issues with absorbing folic acid and puts me at risk of other clotting issues during pregnancy. I had a wonderful pregnancy and birth and five weeks postpartum started to hemmorage and had to have an emergency d&c for a rare placental complication. Not the way I imagined things and I will have to be very highly monitored my next pregnancy---but I have a perfect baby girl which is all I could ever hope for. Thank you for sharing your story. Blessings to your family!

Shannon said...

Wow. I just clicked over from Eat Live Run and then clicked over to Embry's birth story. This really resonated with me as I, too, have Factor Five Leiden. I don't have children yet, but, Lord willing, my husband and I will probably try in the next year or two. My GYN told me I'd have to be on Heparin throughout pregnancy because of the potential for blood clots. Admittedly, I brushed off her concern and always assumed that I wouldn't take any medication when the time comes (my mom has it too since it is a genetic disorder, and had two kids with no clots). Reading Cori's story has really opened my eyes to what could happen with a blood clot during pregnancy. Thank you both for sharing!

Rebecca Hester said...

What a powerful, beautiful story detailing the importance of trusting in God. I am pregnant with my first baby, and this story really resonated with me. Also your birth story too, Ruthie. I'm praying for a healthy baby and delivery, but it's all in God's hands. Thank you Cori for sharing, God is good!!!

Emilie said...

I am in tears after reading this. I love looking at pictures of Embry and Ford on instagram and I had no idea about all of the heartache Cori and her husband experienced. God is so good!!

I think it is so amazing that Cori kept being persistent about the concern over a blood clot, goes to show you we truly know our bodies best!

Related Posts Plugin for WordPress, Blogger...