March of Dimes

SHARE HOME > COMMUNITY CENTER

THE SHARE COMMUNITY BLOG

ShareBloggers

May 2013

Category: Home

Sun

Mon

Tue

Wed

Thu

Fri

Sat

A FRIGHTENING JOURNEY THROUGH HELL(P) AND BACK: PRE-ECLAMPSIA AWARENESS MONTH PART 1 OF 3

May 07, 2013 01:02am (EST)

My first symptom of preeclampsia was pretty random. I was in the mall, ready to head down an escalator and realized that I didn't have any depth perception. I wasn't sure where each step started and ended. I mentioned it to my doctor at my monthly appointment and he told me that eye problems were pretty common in pregnancy. I was 22 weeks pregnant at the time. Slowly, my symptoms increased. I was itchy all the time. I had trouble breathing when I laid down. My urine was brownish orange and I never had to pee. I had headaches and more issues with my vision. My legs and ankles were swelling. I would call the doctor with each new symptom but was always assured that I was fine.

Finally, at the start of my 25th week, I called the doctor. I was going to bed with swollen ankles and waking up with them. It was 2002 so the internet wasn't as widespread but I had entered in my symptoms and I was textbook for preeclampsia. The nurse, once again, told me to come in at my next appointment which was in 9 days. I ignored her and drove to his office. My blood pressure was sky high at 180/120. She finally got the doctor and he asked about my urine. She hadn't taken it yet so I gave up my sample. A few minutes later, he came into the exam room and said, "I'm going to have you lay down for a few minutes on your left side and see if we can't get your bp down." I showed him my ankles which were so swollen that I was wearing slippers that were two sizes too big (one of the first things I threw away when I got out of the hospital). Twenty minutes later, he came back with a post-it in his hand. It simply read "+5, severe preeclampsia. He told me that he was putting me on bedrest and that I needed to get to the hospital right away. (Yes, he let me drive)

Once at the hospital, I had no idea where to go. Labor and delivery didn't seem right but having been given no real instructions, that's where I headed. I was crying as I spoke to the nurse but she just sent me to the waiting room until she heard from my doctor. I sat in a chair and cried as I watched laboring women and their partners wandering through the halls, mindlessly rubbing their big bellies. I couldn't remember my husband's cell number so I had to call a friend and ask her to find him. Fifteen minutes later, I looked up to see four nurses wheeling a wheelchair towards me. They were very careful to not let me move much as the rushed me towards a room. They got me in a bed and one put in an IV, one hooked up a monitor, one got me water and some blood pressure meds and yet another started wrapping my bed in pillows. I had my one and only seizure ten minutes later. It was very mild but very scary.

I spent the next 24 hours on a urine test. I was told that the +5 on my initial urine test was a very bad sign and that if my 24 hour came back worse, then I would probably be transferred to a hospital with a NICU. In the meantime, I kept adding new symptoms. My "favorite" was the hyperreflexivity. If my arms or legs were touched, that limb would flail like crazy. The doctor's hope was to get me to 34 weeks.

Thirty six hours after being admitted, I was told that I was being transferred to downtown Indianapolis. My urine test came back at a +19. I was in a Catholic hospital so they sent in a nun to be with me and bless me. I was put on mag sulfate and transferred via ambulance. I wasn't allowed to be in the ambulance without a doctor with me. So two EMTs and a doctor rode along as I was admitted to OBICU and met my new doctor. His goal was 30 weeks. I gave up 21 vials of blood at admission (gotta love research hospitals) and the nurse told me she had never had to take that many.

I didn't have any of the usual symptoms of mag that I have since heard about. I felt great. But I woke up in the middle of the night with a new symptom. I could no longer see out of my left eye. My BP spiked at 230/180. The nurses were taking blood every hour. I had a migraine headache. I was weighed and had put on about forty pounds in the last week. My doctor changed my goal to just make it through the weekend. He told me that I was standing on the edge of a cliff and each day that I held on gave my daughter a better chance at survival. At around 2:30, I started vomiting and we knew that I had just fallen off the cliff. Blood draws were increased to every half hour and the nurse told me to let her know if my stomach started hurting. Well, like most people, that made my stomach hurt. I was convinced however, that it was of an issue with bowel movements. Instead I was going into liver and kidney failure. It felt like I had a steel band wrapped around my abdomen that was constantly tightening. On top of all that, they had to put me on oxygen because I started having trouble breathing.

I didn't hear the words HELLP Syndrome until days later when I was in recovery. My last blood sample came back with very bad results. I felt like I was in a tv show as my resident gave me a tense smile then walked out my door and screamed down the hallway, "Get Dr G in here NOW!!" I signed a surgical waiver. As I was being wheeled out of my room, the nurse waved my husband forward and told him. "You need to say goodbye. We'll get you gowned up in a second but you need to do that first." Oddly, I was at peace by then. All decisions had been taken out of my hands and the pain was no longer there. Because of my swelling, it took two anesthesiologists to take care of me and before I knew it, it was c-section time. I found out later that although she didn't cry, Riley's scores were not bad for a 25 weeker. During delivery, they discovered a pretty large hematoma on my liver. It was three and a half days from diagnosis to delivery. I stayed on mag and oxygen for another 24 hours. At 48 hours post delivery, I was transferred to a post-partum room. And one day later, I was released from the hospital.

It took two weeks for my blood pressure to return to normal. And honestly, that pretty much happened overnight. I got up and took my bp pill and pretty much immediately hit the floor because it dropped too low. When I went back for my six week appointment, my doctor showed me the sign that they had made by the phone with symptoms of preeclampsia. I also found out that the nurse had been terminated.

With Riley in the NICU and so sick, I never really had the time or energy to focus on my own health and what I had been through. However, six months on the nose after her birth, I had a little PTSD episode. I realized how close I had come...how close we both had come to shuffling off the ole' mortal coil. I envisioned my husband trying to move on and those flashes of imagination broke my heart. I'm lucky to be alive. I'm lucky that I was born in a time where medicine exisited to save me and my child.

I know that preeclampsia (and ultimately for me, eclampsia and HELLP Syndrome) is the number one killer of pregnant women. I'm lucky that I presented with textbook symptoms so that I was easily diagnosed and I'm proud of myself for listening to my body and insisting I be treated. I'm also lucky to be given the platform to educate not only about Riley's 90 day stay in the NICU but about preeclampsia and encourage women and their loved ones to be on the lookout. We are lucky to be survivors and that in our case, preeclampsia didn't win.

Thank you Julie, aka Whosures for sharing your story.

For more information on Pre-Eclampsia: Pre-Eclampsia

Posted by Akeelah's Mommy | Comments: (3) | Permalink

A STORY WITH HEART: CONGENITAL HEART DEFECTS

Mar 07, 2013 05:33pm (EST)

Hi Everyone,

February is Heart month, and February 7-14th was CHD Awareness week. It's never too late to be aware!

As I tell you our story, I want to try and educate you as well. CHD = Congenital Heart Defects/Disease.

In April of 2009 we found out we were pregnant with our perfect blessing. Unfortunately, we only made it to 26 weeks gestation, had an emergency C-section and started our journey with our daughter, Tori. Tori had a pleura of health issues including a PDA (Patent ductus arteriosus) that wouldn’t close, an ASD (Atrial Septal Defect) that we couldn’t shake and severe BPD (Bronchopulmonary dysplasia).

I know, I know, these are big, scary words that no one knows about unless thrown into the heart defect world after prematurity or is studying to be a doctor.

We had a wonderful team of neonatologists, cardiologists and pulmonary dr.’s in the NICU . Her PDA closed on its own with medication at about 4 weeks old and the ASD started at about 11-12mm large.

Read more about CHD here: http://www.cdc.gov/ncbddd/heartdefects/

Read more about PDA here: http://www.nhlbi.nih.gov/health/health-topics/topics/pda/

Read more about ASD here: http://www.cdc.gov/ncbddd/heartdefects/atrialseptaldefect.html

Did you know ASD’s are more common in females than males? We didn’t know either.

Coming back to Tori and her heart, her PDA closed up at about 4 weeks with medications called Indocin and NSAIDS. Amen! Her flapper closed!! However, we still have 3 holes in our heart we need to worry about. Our cardiologist was amazing up until about Tori turned 2 years of age. Tori wasn’t gaining weight. She wasn’t growing. She wasn’t breathing properly. What is going on? Why is my child still on oxygen at home and why is she still so tiny? We kept a close eye on Tori’s heart with Cardiology visits every 3 months. Month 6, 9, 12 all went great. Her holes were getting smaller, but Tori wasn’t getting bigger.

Finally, at her 15 month cardiology visit, her Dr. tells us she wants to do surgery. “We will have to Crack open her chest to fix it” were her exact words. My child has no appetite. She isn’t getting taller, she isn’t gaining weight, which is why they wanted to go in and do surgery to close up the holes. With that being said, we decided it was best to get a 2nd opinion. No one is going to crack my kids chest open. Our intuition was right.

We first met our new cardiologist in June of 2010. Our initial visit was an EKG and x-ray. Yes the holes are still there, but this time only about 8-9mm. They are getting smaller. By January of 2011 those holes were at 5-6mm and by July of 2011 down to 2-3mm.

Is this really happening? We had our last follow up at our Children's Hospital in January 2012 and were discharged due to her holes closing. EUREKA! A 10 thousand pound weight has been lifted off of my shoulders. My child will be okay!

My child will be okay. My family will be okay.

The emotional 2 years of my daughter’s life with the cardiac issues which then turned into pulmonary issues is why we try to spread the word about CHD awareness. Two heart defects in a tiny little girl. Two heart defects that changed our life. Please, help spread the word, get educated, and become aware.

-Liz, aka liz loschinskey, Author of LBT and mom of Mikey & Tori

Posted by Akeelah's Mommy | Comments: (3) | Permalink

BIRTH DEFECTS PREVENTION MONTH BLOG SERIES: PART 3 OF 3

Feb 07, 2013 06:52pm (EST)

Hi everyone,

January was Birth Defects Prevention month. While the month may be over, the fight to prevent birth defects continues on. Every 4 ½ minutes, a baby is born in the United States with a major birth defect. That is 1 in 33 babies in America, and 8 million babies a year world wide. These conditions are common, costly and critical. In fact, birth defects are a leading cause of death in the first year of life .

As many of us here know, even for affected babies who survive and live with these conditions, birth defects increase the risk for long-term disabilities. Birth defects not only impact our babies born with these conditions; they also have an emotional and financial impact on their families.

In case you missed them, here are some of the national March of Dimes blog posts on birth defects from this past month:

Folic acid prevents birth defects

Amniotic band syndrome

Mom’s weight and baby’s health

My colleague Barbara C. is also doing a weekly blog series on delays and disabilities. . She talks about warning signs to milestones to how to get help and services for your child.

And please don’t forget our forum on Birth Defects, Diseases, and Disorders here on ShareYourStory. You’ll find other parents, get support and answers and maybe provide support to someone else. If don’t see what you are looking for….start a discussion. Do you have a question about your child’s birth defect? You can ask there. We’ll find it.

Finally, a great resource that we here at the March of Dimes trust for accurate and useful information on birth defects is NORD (National Organization for Rare Disorders).

Hope this helps.

best,

James

Posted by James SooHoo | Comments: (2) | Permalink

Archives