WARNING: This may be the most boring, long-winded, unfunny, and grammatically incorrect blog you've ever seen...
SORRY!
I hope you'll understand that I'm not an eloquent, or clever, or funny, or inspirational writer. I needed a way to share my story without having to retell it each time. I hope to share this story with as many people as possible because my hope is that you'll join me and my family in praying for a miracle.
This blog is also for every parent out there who has received a diagnosis of Down syndrome and fetal hydrops. It is for every parent that has had a doctor give them no hope.
I made a promise to God a few days ago. It was in one of my many, pleading prayers he has heard recently. I promised Him that if He chose to give me a miracle, and let my baby girl live, that I would share her story with as many people as I possibly could. As this journey would become my testimony of faith, trust, and God's love.
However, after some reflection, I realized this story needs to be shared regardless of the outcome. God has already been so good to my family. He doesn't owe me anything. I will share the great things He has done already.
So I've decided to keep a blog as my personal and public journal. Please keep in mind I am NOT a writer by any stretch of the imagination. Blogging is not something I would normally choose to do. This blog will allow me to share our story with friends, families, and strangers. And hopefully, will help a mother and father somewhere faced with the same devastating prognosis we have received.
I'm going to start from the beginning and try to get caught up to where we are now.
March 28th 2013:
I got the shock of my life! I found out we were expecting a baby. We had no intentions of getting pregnant this year or possibly ever again. I cried for two days worrying over how we would afford another baby, where we would put another baby, what this would mean for my 15 month old girl (Paisley), how this would effect Jake (my step-son) and his upcoming brain surgery, how this would effect my mom who has already rearranged her world in order to keep Paisley while I work. What would we do??? I was so scared to tell Mike and my mom. Little did I know how amazing and supportive they both would be that day and each day after.
Of course, it would only take about 48 hours for the shock to wear off and the excitement to begin. I LOVE being a mom. Having Paisley was the best thing that has ever happened to me. My pregnancy with Paisley was perfect and I couldn't wait to do it all again!
April 24th 2013 (9 weeks pregnant)- Our first appointment to confirm the pregnancy and meet with my new Obgyn:
I was so sad to leave the Obgyn that delivered Paisley. Due to insurance, I had to find another office. I settled for an office affiliated with Winnie Palmer Hospital. Because my pregnancy with Paisley had gone so perfectly, I didn't worry too much about which doctor to choose, and I actually saw a midwife for my first appointment.
The first appointment went perfectly. We saw a strong little heartbeat and were given a due date of late November. The midwife suggested I schedule a level 2 ultrasound at Winnie Palmer because of my advanced maternal age (fancy way of saying I'm old). I turned 36 years old about a week before getting pregnant. I happily agreed. We had the same ultrasound with Paisley and everything had gone perfectly. I couldn't wait to go back to Winnie!
That night Mike came home with a bundle of pink and blue balloons and one of the sweetest cards he has ever written me. We were so excited.
May 15, 2013 (12 weeks pregnant) Our level 2 ultrasound at Winnie:
I remember my mom was not feeling well that day so I decided to take the day off work to keep Paisley while she rested. Our appt. was at 2:45 and mom insisted on being there even though she didn't feel well. What would I do without my mom?
I remember being so excited. I wore my favorite skirt and dressed Paisley in an adorable new outfit. I begged Mike not to take off work for the appt. because Jake's surgery was only a month away and I didn't want him to ask for too much time off.
So me, mom, and Paisley piled into the small ultrasound office. The nurse was very sweet and bubbly at first. About halfway through the scan she got very quiet. When it was over she quickly left the room to get the doctor. I immediately looked at mom and said,"Something is wrong." I just knew. A few minutes later we would meet Dr. Oleary for the first time. He walked in, introduced himself, and everything else is a blur to me. I know he went on to explain they had found what is called a Cystic Hygroma on the back of the baby's neck. This is a build up of fluid that shouldn't be there. He went on to explain all the reasons the hygroma might be there. I didn't hear a thing. The next thing I remember is having my blood drawn and looking up to see Mike had arrived. My mom must have called him when I walked out of the room. I'll never forget the look of love and concern on his face at that moment. We were then ushered into a small office to speak with a genetic counselor. Again, I don't remember much other than her explaining that my blood was drawn for a test called Maternit21. It would hopefully rule out causes for the hygroma like Down syndrome. She told us the results would take a week or two and that she would call us.
From that day on there are a lot of blurry spots for me. There have been so many tears, sleepless nights, countless hours of internet searching. All I can say is I wouldn't wish any of it on my worst enemy.
May 23, 2013 (13 weeks pregnant) The phone call that would change everything...
I got to work really early that Thursday morning. I decided I would call the genetic counselor's office as soon as they opened. I hadn't heard from Kristan (our counselor) and I had a feeling the results were in. Kristan was there and asked me to hold on while she pulled the results. She came back on the phone and simply said, "I'm sorry, the results aren't what you were hoping for. Your baby has Down syndrome."
There are no words in the world to describe what that moment was like for me. I was alone and at work. I could feel myself start to fall apart so I knew I needed to get off the phone and out of the building as quickly as possible. Before I hung up she asked if I wanted to to know the sex of the baby. Since the test looks at chromosomes, it is able to give the sex. She told me we were having a baby girl.
I immediately called Mike. Once again, he was so supportive and loving. He said, "She's our girl, we'll love her no matter what." If Mike was scared or shocked he never once let me see it. His only concern from the beginning has been for my health.
My next call was to my mom. I fell apart when I heard her voice. This wouldn't be the only time over the next few months I would fall apart around my mom. I was able to get the words out, but that was it. She said I needed to come home. So I did. My mom has been my rock, strength, counselor, and cheerleader throughout this pregnancy. She has taken care of me when I haven't been able to take care of myself. She has spent endless hours cooking, cleaning, and caring for my baby girl when I couldn't. I can't imagine the burden I've been on her, but I don't know what I would do without her.
May 23 was one of the hardest and saddest days of my life. I try not to think about it too much. I sent an email to some of my coworkers to explain what was going on. I wasn't sure what else to do at that point. That night was horrible. I did not sleep. It was one of the loneliest and saddest nights of my life. My mind would not stop racing. I had so many questions, concerns, worries, fears. The next day I decided I had to educate myself as much as possible about Down syndrome and what this would mean for our girl and our family.
Once the shock of the diagnosis wore off, I started to feel much better. We shared the news with family and friends. Mostly, the support was overwhelming. I prayed for strength, wisdom, and courage. I felt a peace about my daughter's diagnosis. It felt as if God knew exactly what He was doing when He decided to make her mine.
I read every book I could get my hands on about Down sydrome. Especially books written by mothers of babies with Ds.
June 5, 2013: 2nd ultrasound at Winnie Palmer (15 weeks pregnant):
This too, was one of the hardest days for me. I thought that our girl's diagnosis of Down syndrome was the shock in this pregnancy. I went in expecting to see improvement in her swelling. It never occurred to me that we could receive news that was way more devastating than Down syndrome.
After the scan, Dr. Oleary came in again. This time, Mike and my mom were both with me. He pulled up the pictures and began to show us that Baby Girl's swelling had dramatically increased. It was now all over her little body and had developed into something fatal, hydrops. He explained my pregnancy was considered lethal at this point. He told us our daughter would not heal, and his best advice would be to terminate my pregnancy. At this point, risks to my health were brought up. I remember being so unbelievably heartbroken. My head dropped, and it felt like all the life just fell out of my body. I was devastated. I couldn't believe we were being given no hope at all. We asked what would happen if I didn't have any major effects to my health and decided to continue on with the pregnancy. He told us that sometimes people wait and hope for miracles, but they don't happen. He advised me to think of my health and the risks. He wanted me to terminate my pregnancy. I told him I needed a few days to think about things but that we would get back to him with our decision.
Once again I was devastated. I felt like I couldn't possibly take anymore. I battled with the decision for days. Ultimately, I never could make that appointment that would end her life. Her heart was beating and I felt like it wasn't my choice to make. I knew that I was going to have to wait and see things through. I prayed that God would give me a sign. I also prayed for strength. One of my biggest fears in life has always been having a stillborn baby. This was very quickly becoming my reality.
A week later was Jake's brain surgery. I could write for days about the miracle that is Jake. I believe wholeheartedly that God gave us a miracle that day. Jake's surgery went better than any of us imagined.
June 10, 2013 (16 weeks pregnant): We went for a second opinion with another maternal fetal medicine specialist.
The news was once again devastating. She gave us no hope. She also told us that even if I were to carry to term, our baby wouldn't live outside the womb for more than 2 days.
At this point I was exhausted. I had given up. Jake's surgery was in 2 days. I decided to stop thinking about the baby and focus on Jake and being a support for my husband.
I can't imagine what Mike was going through those days leading up to the surgery. Never once did he falter or break down. He was so strong for me at a time that I should have been strong for him.
I decided I would take things one day at a time. I wouldn't make any decisions. I made an appt. to see our midwife so that she could at least monitor my health and we could check for a heartbeat every few weeks. Dr. Oleary had made no requests to see me at his office again. He advised me to basically go home and wait for the baby to die.
June 18, 2013 (17 weeks pregnant): appt. with midwife
The midwife wasn't sure what to do with me. I told her I wasn't interested in terminating at this time. So she checked the baby's heartbeat. It was strong as ever. I told her I needed some sort of plan. I felt like no one wanted to treat us. It seemed like everyone had just given up on my baby. She decided to send me back to Dr. Oleary. The plan was to continue to get ultrasounds to monitor my health and watch the swelling. As I was checking out she put her arm around me and said, "I'm so sorry."
June 19, 2013 ( 17 weeks pregnant) : I felt her move for the first time. It broke my heart. I knew it was only going to get harder from that moment.
June 20, 2013 (17 weeks pregnant) 3rd ultrasound at Winnie Palmer:
By this point I dreaded going to Dr. Oleary's office. Each time we went it just got worse.
The girl that scanned us on the previous scan was with us again. She took about 30 minutes and didn't say much. Once again baby girl's heart was beating so strong. She was also moving all around.
When she was done she went to get the doctor. Dr. Oleary has always been so pleasant despite all the bad news he's had to deliver. Once again he was very pleasant and friendly.
He began to look at our pictures and I noticed he was a little quiet. Finally he said he thought he saw some improvement in her swelling! He started comparing pictures and I began to get very excited. The swelling was still there, but the area around her lungs looked so much better. The hygroma on her neck looked better. I could tell he was very surprised.
He then decided that we needed to get a better look at her heart. This brought tears to my eyes because at the last appt. there was no reason to look at her heart because she wasn't expected to live.
After the doctor left, our nurse hugged me and said she was so excited to see the improvement. She made sure to schedule herself to do the scan at our next appt.
That afternoon was the happiest I had been in months. For once there was hope. A little bit of hope changed everything for me. That was the first day I realized that doctors do not know everything. God is the great physician and God touched our girl.
So that is where we are today. I'm currently 18 weeks pregnant. Our next appointment is in 3 weeks.
Last night we decided to name her.
Hannah Belle will be her name. It means God's Grace and Beauty.
I know I am carrying a very sick little girl. I know I still have a very high chance of losing her. This is why I am praying for a miracle and asking you to join me.
I'll try to update as much as possible. Thank you for caring enough to read Hannah's story.
If you would like to message me or comment:
rhorhoc1@gmail.com
