One month old

On Hannah's last day in the NICU she was given a hearing test. She failed the test in her left ear. For the last month I've prepared myself for Hannah to be deaf in one ear. I've tried to not feel defeated by the news because I know that compared to all Hannah's struggles, loss of hearing wouldn't be the worst news. However, I have found myself constantly thinking about it over the last few weeks and continuously making noises in her ear and "testing" her myself. Once again my fears were in vain.

Hannah traveled back to the hospital today to meet with an audiologist at Arnold Palmer Hospital. The appointment was pretty easy. I had to hold her while they hooked a few wires to her head and placed devices in her ear. Hannah slept through the entire process. At the end of the test the doctor looked at me and said, "I have good news and I have even better news." As tears fell down my face I listened to the doctor explain that not only does Hannah hear in BOTH ears, she has better than average hearing in both ears. Praise God!

Once again Hannah continues to amaze me. It seems as though she easily jumps every hurdle placed in front of her. All the while she continues to be the perfect baby. She hardly ever cries or fusses about anything. My mom said it best when she said, "It is like God just clipped her wings and sent her to us." She is our perfect angel.

Two weeks old

We continue to fall more in love with Hannah everyday. She is such a good baby. Our only struggle is keeping her awake long enough to eat! Hannah's pediatrician is thrilled with her progress. I find myself just staring at her, still unable to believe she is here. I absolutely LOVE being home with Hannah and Paisley everyday and am already dreading my return to work in March. Not because I hate my job as a teacher, but because my dream job is to be a stay at home momma.

 

 

We are home!

We were discharged from the hospital yesterday afternoon. We are thrilled to be home with our family. This is going to be the most special Thanksgiving for all of us. Hannah has an appointment today with our pediatrician. We will update as soon as we can! Thank you all for your love and support. 

4 days old...

Hannah is doing so much better. We believe the concerns about her heart and digestion are no longer concerns at this point. She's had a rough first 4 days of life. Our girl has been poked and prodded  and kept away from her parents more than any child should ever be. Despite everything, she continues to fight and heal.

Right now she is battling jaundice. She lives on top of a bilirubin blanket and has to wear dark glasses over her eyes for most of the day. We are praying that tomorrow's test shows the jaundice has gotten better. We believe if the jaundice goes away that the doctors will consider letting us take her home.

Mike and I visit her most of the day and night. We've been staying at the Ronald McDonald house for the last few nights. They've been amazing and I can't imagine how we would have done it without this place. It has been a blessing to remain so close to Hannah, but we are ready to be home. We miss our kids terribly. We've only seen Jake once in the last week, and I can't even put into words what it feels like to be away from Paisley this long. She visits us everyday but it is not the same. I miss rocking her and sleeping next to her every night. I never imagined I would ever have to be away from my girl for this long. My only comfort is knowing she is in the loving care of my mom and dad.

Please continue to pray that Hannah will be home for Thanksgiving. I continue to thank God everyday for this amazing angel He has given us. We can't wait to get her home and have our family back together again.

I'd be lying if I said this week hasn't been a struggle. In fact, I would say this has been the hardest week of my life. I have a new respect and spot in my heart for any mother and father that has ever had to hand over their newborn baby to the arms of the NICU. I can not imagine going through this without Mike, my family, and the loving support of our friends. I am overwhelmed by everyone's love, concern, and support. I pray that I will have very good news to report soon.

Hannah update...

Hannah's first 3 days of life have been very different than what we expected. It has been a roller coaster of emotions since the night of her birth. I don't know why this surprises me though. Has ANYTHING about Miss Hannah been predictable? I should have known she had more in store for us!

Hannah was admitted into the NICU early Friday morning. Our hearts were broken because she had started off doing so well. There were concerns about the amount of work the right side of her heart was doing. She was also having trouble regulating her own body temperature.

After her first feeding in the NICU, the doctor noticed her belly to be a little swollen. X-rays of her stomach showed gas not passing through her digestive system. The doctor then explained this could be a sign of a disease called Hirschsprung's Disease. They also decided to stop her feedings and start an IV for nutrition. Throughout the night Hannah's digestion improved and this morning they allowed me to start nursing again.

Mike and I were discharged from the hospital today. We tried everything we could do to try and stay but nothing worked. Leaving our baby at the hospital is not something that is easy for either of us. We've been given a room at the Ronald McDonald house for now. It isn't too far from the hospital and we'll be visiting Hannah every 2 hours tonight to try and get her on a strong feeding schedule.

We really have no idea when Hannah will be allowed to go home. We've come to learn the NICU is a constant cycle of forward then backward steps. It's not an easy place to be, but we know we must remain positive and continue to be patient. The NICU is a heartbreaking place and it doesn't take long to look and find a family that would trade places with you in a second. Our girl is probably one of the healthiest babies there.

Please continue to pray for Hannah and her momma and daddy. We are having a hard time being away from our baby. We continue to pray for God's strength and healing for Hannah. We would love to have her home for Thanksgiving.

Thank you, thank you, thank you for every gift, phone call, text, and sweet post on Facebook. There is no way we could possibly respond to everyone right now but please know we hear you and appreciate you so much. Our days are a whirlwind of meetings with nurses, doctors, and specialists in between visits with Hannah. I never knew time could fly so fast. With the love and support from our family we are taking things one day at a time.

So many of you asked about visiting Hannah. Please know that once Hannah gets home we will be thrilled to have visitors.

I will try to update as much as possible. Xoxo

Introducing...

There are precious days in this life when you feel so unbelievably grateful to be alive.When life is nothing short of miraculous to witness. When you get to experience a love so fierce it literally takes your breath away. When you can feel God's embrace.

I can count the days I've experienced this feeling on one hand.

Today is one of them.

Introducing our miracle:
Hannah Belle Law

Born November 21, 2013

9:52 pm

Weighs 7.11
19 inches


She is perfectly the girl God intended for her to be. I feel so blessed to hold her and can't stop thanking God for her.

Hannah's entrance into this world was perfect. I'm almost ashamed at how easy it was for me. There were 10 doctors in our delivery room waiting to see if Hannah would need to be taken away for  medical issues. The only doctor we needed was the one that caught her coming into this world. 

As I stare in amazement at this girl I vow to be her greatest cheerleader in this life. I will proudly boast of Hannah and her unique beauty to anyone that will listen. Where she needs me to go, I will go. What she needs me to learn, I will learn. When she needs me to fight for her, I'll go to battle. I do not know what the future holds for Hannah, but I know Who holds her future.

Hannah is currently in the NICU being closely monitored for a few minor things. Please continue to pray that she'll get the all-clear from the doctors and be allowed to go home with us soon. She's quite the star here at Winnie Palmer. 

Mike and I are already so in love. We can't wait for you all to meet her. 

Thank you to my amazing family and friends for loving this little girl and rallying around her. What a wonderful village Mike and I have to help us raise our angel.

1 Samuel 1:27-28

I prayed for this child, and The Lord has granted me what I asked of him. So now I give him to The Lord. For his whole life, he will be given over to The Lord.

32 week update

Yesterday was Hannah’s 32 week ultrasound. I was very nervous because it had been about 6 weeks since her last scan. There is always that thought in the back of my mind of what if the hydrops returns? What if they find something else?

Thank God, Hannah is completely fine! She weighs about 4 pounds and is measuring exactly where she needs to be.

My favorite part of the appointment was watching the doctor’s face as he stared at her pictures in disbelief. He told us again yesterday that she is a miracle. There is no other way to explain it. I know this in my heart, but it feels so good to hear a doctor say it. Especially when it is the same doctor that told me I could pray for a miracle but it wasn’t going to happen.

Hannah will be closely monitored from now until delivery. In addition to our regular check-ups, I’ll have to go to the hospital twice a week for monitoring until she’s born. These are precautionary measures because she has Down syndrome. The doctor feels there is no reason to expect anything other than a normal pregnancy and delivery.

With only 8 (or less) weeks to go, we are starting to get very excited. I can’t believe that in such a short time, I’ll finally get to meet this girl that has rocked my world and taught me so much about faith and God’s goodness. Hannah’s due date was changed to November 28^th- Thanksgiving Day. How perfect.

I continue to humbly thank God for my blessings. I truly believe he heard my cries and listened to the prayers of everyone that prayed for Hannah’s life. It has been a remarkable journey- and this is only the beginning! 

Blessed.

Today I am feeling grateful. Something happened yesterday that was like a slap in the face for me.

Yesterday morning as we were leaving for church, I found myself becoming so frustrated. It sometimes feels impossible to get all four of us out of the house and to church on time. It is hectic, and when I allow it to be, it becomes stressful. Once we got Jake and Paisley loaded into the car, my mind just started racing. How are we going to do this with a third child? How are we going to do this with a third child that has special needs??? Why us? Why does it have to be so hard? Why don’t we have more? Why do we have to work so hard? Why? Why? Why?  

We piled into our favorite church pew a few minutes later. The words to the song we sang were that God is faithful. It was then that I felt the slap in my face.

See, it was just three short months ago that I sat in that same pew with a breaking heart. I remember begging God for Jake’s life. It was the Sunday before his brain surgery. On that very same Sunday we were also begging for Hannah Belle’s life. We had been told there was no chance she would survive. 

There I was… sitting with my beautiful family. Mike had his arms around Jake and I (smiling as always). Jake was singing and smiling. Paisley was in my lap (in her adorable Sunday dress) and Hannah Belle was moving around so much that my dress was actually moving. We were the picture of a happy and healthy family, surrounded by family and friends that love us. 

Jake is still recovering. There are still so many unknowns about his health, however, he is getting stronger each day and I will continue to trust that God is in control.

At Hannah’s last appointment, the same doctor that told me she would not survive finally admitted that she IS a miracle. There is no other way to explain it.

Paisley continues to bring such joy to our lives. She’s a beautiful, healthy, perfect little girl.

I have a husband that still puts love notes in my lunch box. He makes me smile every single day. He works 60 and 70 hour weeks, sometimes 7 days a week and rarely complains. He tells me I’m beautiful every day and is the love of my life. He puts up with my crazy moods, and always finds a way to make me laugh.

I thought to myself, how dare you do ANYTHING other than thank God for this very moment.

It took God gently reminding me of how far we have come in only three short months to remember ALL that I have to be thankful for. I am blessed beyond measure. I have an adoring husband, awesome kids, and the best family I could wish for. We live next door to my amazing parents. I sometimes still can't believe how lucky we are to have found that house.  We have good jobs, a beautiful home. So much that we don’t deserve.

Yes, God has been faithful to my little family. My blessings are too many to count. I will continue to remind myself of this each time I think I have any reason to feel sorry for myself. 

Great news today...

Yesterday morning we had our much anticipated fetal echocardiogram. I didn't sleep well the night before, and my anxiety was high while we drove to the hospital.

 Little did I know there was nothing to fear!

Hannah Belle's little heart looks great. The cardiologist saw no reason for concern. What a relief!
Babies born with Down syndrome have about a 50% chance of heart complications, many requiring surgery within their first year. This is a statistic that has weighed heavily on my mind for the past few months. Once again, our little girl has shown us she is fighting for her life and God continues to be so good to us. Grow little Hannah Belle, GROW!

She is a fighter.

21 weeks pregnant:

It is official; Hannah Belle is a little miracle. She’s also one heck of a fighter!

We had another ultrasound yesterday afternoon. Our regular doctor is on vacation so we met with a new doctor to go over the ultrasound pictures. He said he saw, “No signs of hydrops.” The only fluid she has is a small amount around her heart (which is common in babies with Down syndrome) and she still has the cystic hygroma on her neck. He doesn’t think either is fatal. The hygroma seems to be drastically smaller and shrinking.

 To be clear I asked him if I should be expecting a normal pregnancy from now on. He said he doesn’t see why not. There are still risks involved because of her Down syndrome diagnosis, but he certainly didn’t consider my pregnancy to be “lethal” as the other doctor put it. In other words, we’re planning on having a baby girl in November! Praise God!

Hannah’s next big hurdle will be at her cardiologist appointment at the end of this month. We know she has a 40-50% chance of having a heart defect because she has Down syndrome.

Yes, I’m still very nervous and uncertain about Hannah’s future and what raising a child with Down syndrome will be like. However, I can’t wait to meet this little girl that has fought so hard for her life. I absolutely cannot wait to hold her in my arms and see what wonderful things she has in store for our family. She is only 21 weeks old and has already taught me so much. 

God is good.

Still, it was a bittersweet day. We didn’t receive the news we hoped for with Jake. There is a very good possibility that Jake will have to undergo yet another major brain surgery. Jake needs your prayers. He has been through so much this past year and it has been especially hard for him these past few months. His mom and dad need your prayers as well. Mike and Ginny are mentally and physically exhausted.  There seems to be no easy or definite answer when it comes to the next steps in Jake’s medical care. It is a frustrating and scary place to be. Pray for guidance, peace, and answers for them.

The past few months have been an exhausting roller coaster of emotions. I can’t imagine going through times like these without the loving support of our family and friends. We’ve received cards, flowers, prepared meals, books, and countless words of encouragement. Most importantly, people have prayed diligently for our children. Complete strangers have prayed for our family. We are so grateful.

The reason behind this blog...

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