September 20, 2013

Well I definitely didn’t think I would be blogging from the hospital today. This week didn’t turn out exactly the way we thought it would, but I guess with a heart kid it never does. All we were supposed to do this week was a heart cath to open up her arteries a little more so that her right ventricle wouldn’t have to work so hard. She’s had a chronic cough for the last few months,  so while she was already sedated we elected to do a bronchoscopy. We were not expecting bad news. We were actually expecting to leave here Wednesday being able to put the hospital and doctors behind us for a little while.  We are quickly learning that we should never go into these procedures with high expectations because then it is an even bigger disappointment when you realize things are not getting better.

They started the procedure Tuesday with the bronchoscopy. They found that her left bronchus is 80% obstructed. They can’t be sure what is causing this, but their best guess is that her pulmonary artery is enlarged and laying on top of the bronchus. During the heart cath they didn’t actually do any work. They didn’t find any narrowing of her arteries… this is good news. However, the pressure in her lung arteries is very high so that is concerning.

Somebody wants to go home

Sarah and Marshall came to play

Bestie’s

We were supposed to go home yesterday but Olivia’s oxygen levels are going up and down. She is still on about 1 liter of oxygen. Overnight her levels dipped quite a bit. This could be because of the bronchoscopy and anesthesia, but better safe than sorry. John is on the road until Sunday and I just feel better being at the hospital until things are A-OK.

Sleeping Beauty

Olivia’s team of doctors met this morning to start putting together a plan. First on the agenda is a CT Scan in the morning. She’ll have to be sedated so we will probably be staying in the hospital until Saturday. The options for us right now are to start medications to lower her pressures over the next month. They have talked about putting in a valve, but that means she will have to have an additional surgery in the future to replace it as she grows. The other option is to do a surgery in which they would lift her pulmonary artery up off of the bronchus to relieve the pressure.  After the CT Scan tomorrow they will have a better idea of what they are dealing with and will be able to make a more educated decision. There is a very slight chance they will decide to put off surgery and see if as she grows her airway opens up on its own. There are risks involved in all of the options. I am very thankful they are covering all of their bases and being so thorough. We are so lucky to live 10 minutes away from such a great hospital.

Liz took Olivia for a wagon ride

Story Time

It is hard to process everything that’s going on right now. I feel kind of numb in a way. It makes me sad that my baby has to go through so much. I want nothing more than for Olivia to have a normal childhood, but she may just have her own kind of “normal.” She is such a sweet baby girl and I hate seeing her hooked up to all of the wires, especially now that she is used to being so mobile. She is being a trooper though. She hardly ever complains or cries. I am a lucky mommy to have such a strong little girl. My heart breaks when I think that she may have to go through another surgery. It fills my whole body with fear. I can’t even put into words the way I feel right now. All I know to do is pray for the strength to be the best mommy I can be. When you have a sick child you just have to live in the moment… day by day. It is the only way. If I let my mind go where it wants to go it will just cause nothing but worry. Worry won’t change anything.

September 22, 2013

So long hospital

Well we are home! Yay. What a week!!! Olivia’s CT Scan actually was better than expected.  When she had her first surgery when she was a day old she got an infection of the mediastinum (chest wall). That’s why we spent 6 weeks in the hospital. If you remember, she had a wound vac to help heal the infection. Well, because of that infection she has some scar tissue that has caused a blockage of her airway. This is good news because this means it is NOT her artery so for now no surgery is required. We know she will need a valve replacement at some point but hopefully by the time she needs it they will be able to do it through a heart cath. As far as the blockage, the only treatment they can do right now is oxygen treatment and medication. She will need supplemental oxygen 24/7 to help get her pressures down. There’s no way to know how long she will need it but hopefully just a little while.  She is also taking Viagra (I know… funny).  Viagra was originally used as a pulmonary drug.  It helps relieve the high pressures in her lungs. She is doing really good on it. No side effects which is great. Her condition is something her Pulmonologist is hoping she will outgrow as her lungs get bigger. Every child is different so they can’t give us any answers on that right now.

Little Phil came to visit when we got home.

I was really nervous about her needing to be on oxygen 24/7 at home because she is so active. Luckily, they gave us some extra tubing that stretches from one end of our house to the other so I never have to unhook her or move the compressor. She can just travel about the house as she normally would.  Let me just tell you it is not slowing her down one bit. Last night was our first night home from the hospital and she was back to her crazy little self. She danced and played. She hasn’t fussed a bit about this tubing hanging off of her. She is such a trooper. I would probably be whining about it myself.  We also have some tiny little tanks that I can carry in a shoulder bag. This will be great for our walks at the greenway and trips to Target. These two girls love our little outings. We can’t let the oxygen keep us down right?!?

Daddy comes home today and we are planning to go on a little family vacation.  We had originally planned to fly to Fort Lauderdale but Olivia can’t fly right now because of her lung pressures. Now we are trying to figure out another option. I REALLY want to go to the beach so we are checking into the Destin area so we can drive.  We haven’t been on a real vacation in over 3 years. It’s time!!!

As always, thank you for your prayers. My grandmother said yesterday “God is with you. It is the only way you could ever be strong enough to get through all of this.” She is right. As a human being there is no way you can handle something so stressful on your own. I like to think of myself as a pretty strong person but I am not THAT strong. I am thankful for my sweet friends who took time out of their busy lives this week to come and spend time with us in the hospital.  I don’t know what I would do without them.

My phone constantly chimes with text messages from the friends who can’t make it by and that means just as much. It is so comforting to know that we have so many people that love and support us.  It is very hard to live away from your family and go through something like this so THANK YOU to everyone who follows along on Facebook and sends prayers up for our sweet little warrior angel. We love you and will continue to keep you updated.

Rachel

Oh What A Year It Has Been!!!

Photo by Lila McCann Photography

This last year has been the best, yet the hardest year of my life. It has been beautiful and ugly all at the same time. There have been really great days and there have been really bad days, but hey, that’s life right?!? We all have mountains to climb. Some of them are just little road bumps and others are like Mount Everest. John and I were just dealt the BIG mountain this year and that’s okay. God must have believed we could make it to the other side… and we did. We learned so much about ourselves and have become an even stronger family because of the battles we fought this year.

Photo by Lila McCann Photography

Olivia just turned ONE on May 9th. I can’t believe it. It is so fun to watch her grow into her little personality. For the most part, she is pretty laid back and easy. We can take her just about anywhere with no trouble. That being said,  she also has a very strong temper. She gets so mad sometimes it’s hard not to laugh. She has so much determination and knows exactly what she does and does not want to do. Now that she’s crawling she gets a little more frustrated. She works so hard to get across the room to that electrical outlet only to be picked up and moved back to her starting place 🙂 I’d probably throw a fit too.

She loves Elmo, the Bubble Guppies, her jumpy seat, and her doggies. Her favorite songs are “Five Little Monkeys” and “Trouble” by Taylor Swift. She’ll stop in her tracks to dance if I sing either song. She has been to three #1 parties and has stood side stage at the Ryman all before her first birthday. She loves music. Surprise, surprise. I have to admit I was hoping for a doctor or accountant, but this child was born with music in her bones.

On stage at the Ryman with Daddy

I love to hear her laugh. She has the best giggle in the world. She gets so tickled at Shadow. It is so cute. The sweetest moments are when I find them cuddled up together. She’ll be sound asleep with her hand on his head. It melts my heart. They are slowly becoming besties. It’s funny to watch her get aggravated with him too. If he gets in front of the TV and she’s trying to watch the Chica Show she’ll push him out of the way and tell him off. Poor Shadow… even a baby can alpha him.

As far as her health is concerned, Olivia has been doing really great.  We haven’t had to see the cardiologist for a couple of months. We go this month for an echocardiogram so they can check the function of her right ventricle. As of the last visit, it still hadn’t relaxed yet. Her pulmonary arteries are still a little narrow so we are preparing for another heart cath this summer.  Hopefully that will be the last of her procedures for a while, but we never know. All we can do is pray that God is working in her heart to make it stronger.

We have been so very blessed to live in Nashville where we can get the best care for our sweet baby. Monroe Carell Jr Children’s Hospital is such a wonderful hospital with some of the best doctors in the country. It was our home for 6 weeks after Olivia was born and then again for 2 weeks after her repair surgery. A very expensive home I might add. Olivia’s total medical bills are well over $1 million. Thank GOD for insurance, but even with great insurance we still have accumulated thousands and thousands of dollars in medical bills. I have never really had any health problems in my life (thankfully). I have never really had to use my insurance except for annual doctors appointments. When I signed up I got the highest deductible because the rate was low and I was thinking, “I’m a pretty healthy person, I never get sick…” We all know how expensive health insurance is anyway and I wanted to get maternity too. That adds up. Long story short… my “family” deductible could buy you a Ford Focus. After years of never using my insurance I have met my deductible two years in a row. UGHHHH!!!! I’ve never really blogged about the financial stress all of this has put on us because money seems so irrelevant. We have Olivia. She’s alive and thriving.  It’s hard to complain about medical bills when you look at her sweet face, but one day I was writing with my friend Victoria Banks and telling her about all of the bills and how they  just kept piling up. I just really needed to vent about it for a moment and she is always willing to listen. If you know Victoria, you know that she is one of the sweetest people you will ever meet. Her heart is pure gold. She is one of my MOST special friends.

Next thing I know she and her husband Dave are putting together a benefit to help us pay the medical bills. We are completely humbled with all of the work she has put into this show. Some of my favorite writers and friends are performing. Gary Allan will be headlining the event. Gary is a super busy guy and we are extremely grateful for his generosity. He has already raised over $2000 by auctioning off two front row tables at the event. What do you say to people who are willing to help in such a big way…”Thank you” just doesn’t seem to be enough.

Victoria has also set up a web page to accept donations.

http://www.youcaring.com/medical-fundraiser/olivia-s-fund/59505

Every time I go to the website and see the donations I am so thankful to all of you who have made a contribution. I have shed many tears. May God bless all of you for your generosity.

I have set up a Facebook page for Olivia called “A Special Little Heart.” Come join us. I try to keep everyone updated on her condition and share pictures as she grows.

https://www.facebook.com/groups/ASpecialLittleHeart/

My dream is to turn “A Special Little Heart” into a foundation to help raise money for other families of children with congenital heart defects. I would love to make this event an annual show. I want to someday be able to help other families the way that you all are helping us. That’s what life is all about, right?!?! Loving other people and giving back!!!

There have been times over the last year that I have asked why us? Why Olivia? I realize that we may never know why, but we can choose to take our experience and let it mold us into the people God wants us to be. Being Olivia’s mama has already changed me in ways I never thought possible. I am thankful for every second I have with her, even the hard ones.

Thank you for following Olivia’s story and for praying when we didn’t have the strength. There really are no words to express how we feel. God bless you!!!

Photo by Lila McCann Photography

The Unposted Blog

I wrote this the day after we got home from the hospital and I never posted it. Not sure why, but here it is now…

January 29, 2013

I have been contemplating this blog entry since last night. I didn’t want to blog out of frustration, but then I thought there might be a heart mom out there feeling just like me and she might need to know she’s not alone.  I have spent the last year of my life trying to keep my chin up, trying to believe there is a reason for everything, and smiling when I have felt like screaming and crying. I put on a brave face and barrel on through all of the doctor visits, surgeries, and heart caths… but sometimes I just want to lay in the floor and yell at the sky…WHY? Why does Olivia have to go through this. Why can’t they just fix it? We were told early on that the “full repair” would probably be the last of it. Why is there ALWAYS one more thing they need to do. We thought that once she had the surgery all would be right with the world and we could just go on with our lives like Tetralogy of Fallot never existed. Yeah right. The heart cath was done yesterday to open up the narrowing of her arteries so that her right ventricle would relax and her O2 sats would come back up closer to normal. They did find significant narrowing so the cath really did need to be done and the doctor felt like he had made some progress during the cath. Her sats are still dipping but that could be from her swelling or because of the blood that she lost during the procedure.

Post-Heart Cath

As for sweet Olivia, she is the strongest person I know. I will always look up to my baby girl. She is my hero. After everything she has gone through in the last day she is laughing and squealing at her doggies. Watching Bubble Guppies and dancing. It is true when they say babies are resilient. I never want to seem ungrateful for the miracles God has worked in Olivia’s life. There are no words to express how thankful I am everyday to have her alive and thriving when so many other heart mommies have lost their babies. I still see one man at the hospital whose baby has been there since Olivia was born and I wonder how he does it. I realize how lucky I am, but sometimes I have to tell myself I am human and it is only normal for me to get frustrated or to be sad that Olivia has to go through so much. It’s okay if I need to have a bad day and cry although in all honesty I can’t remember the last time I let myself go there.

Love this smile!!!

February 5, 2013

97 O2 Sats

Olivia’s O2 levels are gradually coming up every day. Yesterday we got a 97 which is awesome. She is so funny. Her personality gets cuter and cuter by the second. While she’s a little behind on some things like crawling she is doing so great in other areas. It’s hard for me to follow the baby app that tells me what she should be doing at 9 months because in some ways physically she is about 7 months because of the 2 months she spent in the hospital. Tennessee has an early intervention program to help kids that have fallen behind because of medical problems. They came to visit us and felt like Olivia was doing amazing considering all that she’s been through. I have a couple of friends who have babies Olivia’s age and even younger that are crawling and even standing up. I have to remind myself that they had a full 2 months at home to just be babies while Olivia was on paralytic drugs and bound to a hospital bed. The other day at Kroger the cashier was asking me how old she was and I said almost 9 months. The cashier said she also had a 9 month old and he was “all over the place.” She asked me if Olivia was doing the same and I reluctantly said “not yet.” The girl laughed and said “mommy must be holding her too much.” I just smiled and agreed, but the mommy in me wanted to tell her the whole story so she wouldn’t think I was a bad mama. Why did it matter what she thought of me and my parenting skills? I don’t know… it just did. I know it’s silly.

Trying out the new bathing suit. First beach trip is around the corner.

I feel so very fortunate that I have been able to spend most of the last 9 months at home with Olivia. Being a mom is the absolute best job in the world. Everything else fails in comparison, and with everything we’ve been through I have come to realize what really matters in life. The things I used to put so much value on I hardly even think about anymore. I see life through different eyes now.

I have ventured out to write a few times in the last year, but it has been so hard to be creative in the middle of all of the medical stuff. Writing has definitely taken a back seat to life, but maybe that’s a good thing. I was so completely burned out when Olivia was born I welcomed the break, but now the break is coming to an end. I will be starting a new publishing deal in March which means I have to build a brand new catalog. I’m excited and nervous all at the same time. I look forward to reconnecting with my favorite co-writers and making some music. I know I’m a little rusty. I know it’s going to be hard to leave Olivia, but I also know I have a lot to say… a lot of emotions to get out… a lot of good songs are on the way 🙂

First Piano Lesson With Daddy

On a closing note, have your ears perked for a familiar voice on a cat food commercial coming soon. I don’t want to give it away just yet, but it’s going to be a “good thing.”

Love to you all!!!

Rachel

A Special Thanksgiving

The hardest thing I’ve ever done is hand my sweet beautiful baby over to the doctors and nurses on November 12, 2012 (our 7th wedding anniversary). We had to be at the hospital at 6:30 a.m., but her surgery didn’t start until around 9:30. She hadn’t eaten anything since 11:45 the night before, but my little angel hardly fussed at all. She watched the fishy in the fish tank with daddy, and we took little walks around the waiting room. She fell asleep in her stroller before they took her back so we just let them push her stroller to the OR so she would stay asleep. There were so many emotions going on in my heart when they wheeled her away… sheer terror, panic, anxiety, and pain. There were also positive emotions like relief, optimism, happiness, trust, and faith that God was and always is in control. John and I stood in the hallway and held each other and cried. Deep down you think everything will be okay, but there is always that looming question… what if she doesn’t make it? What if I have to go home without my baby? It happens everyday in this hospital. A little baby was taken off life support just yesterday morning and died last night. I can not imagine the pain that mother is feeling. I pray for her and every other mother here. Even though none of us know each other, as we pass in the hall there is a look that is given that only we can understand. It is somehow reassuring to know I am not the only mommy going through this. It is sometimes hard to comprehend how we do it, but somehow you just get through it. You have no choice.

Olivia’s surgery lasted 7 long hours. Dr. Christian came out to let us know that everything went great. The repair was done. They weren’t able to save her pulmonary valve, but that will be an easy fix when she is older. For now, there shouldn’t be any more surgeries. Dr. Christian is an amazing surgeon and we feel like we owe her our lives because she fixed Olivia’s heart (plus I think John has a little crush on her) 🙂

We are so thankful for our sweet friends Malia, Philip, Mary Ann, CJ and Nicole who came to sit with us all day. When you live far away from your families your friends are so important. Not that our families didn’t want to be here. They actually were here on the original surgery date of November 8th but it was canceled at the last minute… LONG story. The blessing in all of that was she got to have a weekend of complete spoiling by two sets of grandparents and her auntie Em and uncle Brant.

Seeing Olivia for the first time after the surgery was absolutely heartbreaking. Our lively little girl was sedated and swollen. When she finally opened her eyes she looked at us as if to say, “What just happened to me?” I am so glad she is just 6 months old because she will have no memory of the experience. Her strength and resilience is amazing. She is my hero.

Olivia’s recovery was nowhere near as hard this time as it was the first time around. She is such a strong child. She was out of ICU by day 3. We spent 5 more days on the 7th floor where she entertained all of the nurses and made some big fans. Nurses who had her when she was a newborn all came to see her. That is what makes Vanderbilt Children’s Hospital so special. The nurses really care and love their patients. This time around Olivia had a favorite. Her name is Deena. She taught Livy how to blow kisses. Every time she came in the room Olivia would blow her a smooch.

Olivia will have to have oxygen at home while sleeping. She seems to breathe a little more shallow when she’s getting her shut eye. Hopefully it will only be for a couple of weeks. Lord knows, mommy is getting plenty of hands on experience with medical equipment. Last night, she kept pulling the oxygen out of her nose and putting it in her mouth. This would set off an alarm so loud that I had to scrape myself off of the ceiling every time 🙂

Today is Thanksgiving and we have so much to be thankful for this year. The looming dark cloud has turned into a blue sky, full of hope and happiness. I am especially thankful for my sweet dear friends who came by the hospital to visit, bring coffee, and keep me company. For a fellow heart mom who brought me dinner, and another whom I had only met through Facebook who stopped by to give her support. For those of you who weren’t able to stop by, I still felt your love and prayers through your messages and texts. I love you all. I couldn’t have gotten through this without you.

I am thankful for John’s sweet parents who came to relieve me from the hospital while John was on the road.  I am thankful for the stressed brow that has now become a big smile on my husbands face, for the deep breath I am now able to take, and for the giggles I hear from the living room as Olivia watches the Macy’s Day Parade for the first time. Most of all, this year I am thankful for God’s love and mercy. I am thankful that He has given me the opportunity to be a mother. It is the best thing I have ever done. There is no love that can compare to the love I feel for her. I am thankful for my husband who shares that same love with me. There is nothing better than seeing him look at Olivia with a heart so full it might burst.

We have learned a lot this year, but the biggest lesson has been to “let go and let God” take care of us. When you go through something like this you realize how much of your life is out of your hands. You can’t worry and fret because it won’t change the outcome. You can’t cry and feel sorry for yourself because that won’t help either. God has his reasons for everything. We can try to understand them, but sometimes we are just not supposed to. We are only human and can’t always comprehend His plan, but I truly believe it is always the right and the best one.

The biggest lesson I believe He wanted me to learn through all of this is that life goes by fast and that I should always try to live in the moment. I know that sounds cliche, but I have always worried about what tomorrow would bring. I don’t really do that anymore. Every day I am thankful to spend it with my husband, my daughter, and my sweet doggies. Today, I don’t know what the future holds and that is okay. I’m alive and healthy. Olivia’s broken heart has been fixed. We can finally breathe again. We have a lot to look forward to, but we will keep our eyes on the present moment knowing that God has his arms wrapped around us.

Happy Turkey Day from the Lancaster family. May you all have a blessed and wonderful holiday season. We love and appreciate each and every one of you.

With Love,

Rachel, John, Olivia, Shadow, and Gracie

10 Days Away

Right now, I am having my second cup of coffee while watching Olivia play in her activity center.  She is just now big enough to reach some of the hanging toys, but her favorite is still her monkey that her cousin Phil got her. I love watching her discover new things. She has definitely found her voice. She jibber jabbers nonstop. She wakes up talking. She gets that from me. John has asked me if we can play the quiet game many times in the last 7 years  🙂 The best part of the morning is lying in bed listening to her tell the ceiling fan all about her dreams from the night before. She just coo’s and squeals. She hardly ever stirs me from my sleep by crying. This morning was no different. John and I just listened and laughed. It really is the sweetest sound in the world.

This morning we spent a few minutes talking to her owls that hang from the mobile her “auntie” Lila got her. Those little owls have made diaper changing a breeze. She has finally discovered the owl mural on the wall so we stopped to talk to them on the way out. She gave Shadow a little giggle as we walked down the hall. Sometimes I wonder what she must think about the dogs. Gracie always sits beside her while I make a bottle. I think she’s babysitting for me. Olivia tells Gracie lots of stories because she’s a good listener. I bet she’ll be an even better listener when cheerios are falling from the highchair.

It’s on days like this that I forget my sweet baby has a heart condition. She looks and acts like every other 5-month-old baby I’ve ever known. It is so hard to believe that in just 10 days we will be walking her into Vanderbilt Children’s Hospital for her 2^nd open-heart surgery. We have known the day was coming since before she was born, but no amount of time can prepare you for handing your baby over to a team of doctors, knowing she is about to be cut open. I’m sorry to be so graphic, but that is what’s about to happen. A sharp pain shoots through my chest every time I think about it. As a mother, your instinct is to protect your child from pain.  I can’t do that.  No matter how well the surgery goes, she will feel pain and although we have already endured one surgery, this one is different. When she was only 24 hours old, we loved her more than anything in the world, but we didn’t know her yet. She didn’t have a personality yet.  She hadn’t smiled or giggled. She hadn’t reached for me or touched my face with her little hands.  She hadn’t grabbed her daddy’s beard or fallen asleep on his chest. I remember a friend of mine saying she wished they had done her babies full repair when she was first born because she thought it would have been easier for her and her husband. I understand that now. The love and attachment only grows stronger and stronger, as it should. I am absolutely terrified of November 8^th.  I am also very excited. I know that sounds crazy, but I know once the surgery is over we will breathe again. We have been holding our breath since the day we found out about her heart defect 10 months ago.  There is a heaviness that always hangs around.  We can try to ignore it, but it is always here. The only way to get through the day without breaking down is to pray, trust God and know that He is in control. I think I may have gone insane by now if I didn’t have my faith. God is good and He has a purpose in all that He does.  We may not know it now, but one day we will see it bright as the sun.  That doesn’t make it any easier but it does give me a sense of peace. I am letting myself be scared. I am also letting myself think about all of the possible outcomes, the good and the bad. Most of all, I am putting my trust and my baby’s sweet life in God’s hands, knowing that she really belongs to Him. He created her for His purpose. John and I are just the lucky people who get to be her mom and dad here on earth. We have been blessed with such a sweet baby and it breaks my heart to know that she will have to experience another surgery and another long stay in the hospital. Please keep our family in your prayers this week and next as we prepare ourselves for what lies ahead. It is only through God that we will find our strength and courage.

4 1/2 months later…

Olivia Katharine Lancaster was born May 9, 2012 at Vanderbilt. She came into the world at 9:14 a.m. after 30 long hours of labor. She weighed 7lbs 3 oz and was 19 inches long. Sounds pretty normal doesn’t it?!?!  Well, it wasn’t.

My water broke at 3:30 a.m. on May 8^th at 37 ½ weeks pregnant. We were so excited when we called the doctor and he said “head to the hospital.” I wasn’t having any labor pains yet so it was a little surreal. We got checked in and moved into our labor and delivery room. My doctor was going to give me until noon to dilate on my own.  When noon rolled around I was only at 2 centimeters so we started the pitocin. I still hadn’t felt my contractions, but that was about to change. When I finally started to feel them I was surprised at my tolerance level. I was 18 hours into labor before I decided I couldn’t take it anymore. I was terrified to get an epidural so I waited as long as I possibly could.  Even though the epidural made the pain go away, I hated the way it made me feel.  I panicked at one point because I couldn’t move my legs. I made John wiggle my toes so I would know they were still there. I was not the happy numbed up pregnant woman. I cried more with the epidural than without. Finally, I fell asleep for a couple of hours and dilated to 10 centimeters. It was time to push.  I pushed for 3 long hours. The doctor even tried to use the vacuum to get Olivia to move but finally the decision was made to have a c-section. I never thought that would sound good to me, but I was so tired I was almost begging for it.  John was amazing through it all. We were ready to have our baby no matter how she had to come into the world. Neither of us could have predicted what would happen next.

As I was wheeled into operating room I was so nauseated that I threw up. I think it was a combination of the antibiotics they had given me and the sheer terror of being cut open for the first time in my life, but I knew it would all be worth it. I remember hearing Olivia cry off in the distance and John saying, “she’s here baby.” I knew going into the delivery that I wouldn’t get to hold her. I was told they would give us a quick peek and then she would be rushed away to the NICU because of her heart defect. When I saw her little face I felt something I had never felt before. I was so in love already. They took her away… I was so out of it that I was unaware that she was barely breathing and in very critical condition.

The doctor’s began to sew me back up when I was stricken with the worst pain I’ve ever felt in my chest. I truly thought I was having a heart attack but I was reassured that it was just referred pain from the c-section.  Finally, they took me back to my labor and delivery room where I would rest until I could go to the NICU to see Olivia. Everything seemed okay and John decided while I was asleep he would run home and get a change of clothes and check on the dogs. We had no idea what was about to happen.

My nurse came in to check on me about an hour later. I remember seeing a really strange look on her face. The next thing I knew there was a room full of doctor’s and nurses. I had suffered a post-partum hemorrhage. They were frantically trying to stop the bleeding. At one point I heard the nurse say my blood pressure had dropped to 60 over 40. I knew that wasn’t good. They were giving me epinephrine to speed up my heart rate and calling John to come back to the hospital. I heard the word “emergency.” I was in and out of consciousness, but I remember thinking at one point that I was probably dying. When John walked in I could see on his face that things were really bad. He later said he had never seen so much blood in his life. It was everywhere.  I don’t know how long it took for them to stop the bleeding but eventually they did. By then I had lost ¼ of the blood in my body.  I literally almost died.

While I was fighting for my life so was my baby girl. She was not doing very well and the cardiologist decided she needed to have surgery. She would need a shunt placed in her tiny little heart. The surgeon called me and told me if I wanted to see her I should probably come that night. However, that was impossible due to my own critical condition. I cried so hard thinking I may never meet my daughter. What if she died during surgery? The fear and anxiety was crippling, but I knew it was completely out of my control. I had to surrender it all to God. He was in complete control.

The surgery seemed to take a lifetime. They had to make two separate incisions to get the shunt placed properly. One of the incisions would be made on her side and the other right down the middle of her chest. She survived the surgery but it was not going to be an easy road to recovery.

We spent weeks in the Pediatric Intensive Care Unit at Vanderbilt Children’s Hospital. Olivia had her very own nurse around the clock. She had a breathing tube and what seemed like a million wires coming out of her body. Her little bed looked like a space ship with all of the equipment on each side. The constant beeping was enough to drive a person insane. Something was always getting unhooked. IV’s were always running out of medicine. At one point, they had Olivia on a paralytic drug because she kept getting so mad and trying to pull out her breathing tube. It was so sad to see her lying there unable to move or make a sound.

Shortly after her surgery we found out that Olivia also has Digeorge Syndrome. Digeorge Syndrome is a chromosomal disorder that can cause over 180 symptoms with the most common being heart defects, calcium deficiencies, and immune system problems. In the days after the diagnosis there must have been 10 different specialists that came in to examine her to determine which parts of Digeorge she may have. She definitely had a calcium deficiency along with her heart defect. They were also concerned about her immune system since she had developed a severe infection that kept her incisions from healing properly. They placed a wound vac on the incisions and started a 28-day run of two antibiotics. At that point, I knew we were not going home anytime soon.

During those few weeks in the PCCU, Olivia had some good days and some very bad days. We would leave her at night in stable condition and come back the next morning to find her critical again. Her breathing tube came out and went right back in. Her oxygen levels were constantly dipping. Her blood pressure would be too high one minute and too low the next. It was a constant roller coaster ride.  There were moments when we wondered if we would ever take her home, but Olivia was a fighter. She had quite the temper from the very start, which the nurses loved. They said it meant she was strong willed!!! We would all laugh at how determined she was to pull her feeding tube out. I think she pulled it out a total of 6 times.

It took weeks to stabilize Olivia enough to move her out of the PCCU and up to the 7^th floor. The 7^th floor is what they call the “transition floor.”  I had to learn how to administer her medicine and insert her feeding tube. I barely knew how to change a diaper, which was a feat in itself with all of her tubes and wires.  As the weeks went by those tubes and wires were removed one by one and her oxygen levels started to level out in the high 80’s and low 90’s.  She completed her antibiotics and the wound vac finally came off. Olivia got to come home on June 23, 2012 at 6 weeks old.  John was on the road so his mom and sister came to Nashville to help me get my baby home.  We had a feeding tube and an apnea monitor to deal with along with about 3-4 different medicines.  I also had to change her dressings on her incision twice a day.  It was so overwhelming at first.  John would be working a lot because it was June… prime touring season. I honestly didn’t know how I was going to do it all.  I am thankful everyday for our friends and families. Without them I would’ve gone crazy.

Olivia was trying to learn to eat from a bottle. I would have to squeeze her cheeks while she ate so she could latch on to the nipple.  She would only take about 15-20 ml’s a feeding by mouth and the rest would go into the tube.  The tube was the most frustrating part of my day.  Olivia would gag on it and projectile vomit her whole feeding every single time.  It was so traumatic on her that she would scream and cry. I tried every kind of bottle to get her to eat better.  I held her upright so she wouldn’t spit up but that didn’t help at all.  I cried every day because I felt so helpless. The only person who hated the tube more than me was Olivia. She pulled it out twice.  I accidentally pulled it out once and then finally Olivia vomited so hard it flew out of her nose. We never put it back in.  John and I decided to go against everything we had been told and take a chance that Olivia would learn to take her whole feeding from her bottle. The first few days were really tough and I almost caved in and put the tube back in, but all of the sudden something clicked.  She started eating more and more.  The spitting up slowing went from every feeding to once a day to not at all.  The doctors said as long as she continued to gain weight we could leave the tube out.  Now she is eating 4 ounces a feeding every 3 hours which is amazing for her.  Her weight gain is right where it’s supposed to be as you can see in this adorable picture.

I can’t believe my baby girl is 4 1/2 months old. Time really does fly when they are this little. Every day she is learning something new. She loves Bubble Guppies and Barney. She is a really happy baby and a complete joy to live with. She sleeps through the night and wakes up smiling, but she also knows how to throw one heck of a fit!!!  She has finally discovered the dogs AND how to laugh at them 🙂 It’s the cutest thing ever!!!! They love her.  Shadow now has a purpose… to protect his “sister.”

We are currently awaiting Olivia’s full repair surgery. The doctors are saying it will be in late October.  Please keep us in your prayers. We still have a long journey ahead.

Doctors, doctors, and more doctors

In the last two weeks I’ve been to the doctor 5 times. It’s a good thing I don’t share John’s fear of medical professionals or we would be in a lot of trouble. I actually love hospitals and doctor’s offices but I’m a little over getting poked and prodded.

On April 5th, we had our second appointment with Olivia’s cardiologist, Dr. Killen. She is a very sweet lady and has been amazing with us. She explains everything in detail and always answers all of our questions. She did a second fetal echo and everything seems to be the same as before. Nothing has gotten better but nothing is any worse. Thankfully, it looks like Olivia’s Tetralogy of Fallot is one of the best case scenario situations. They won’t know for sure until she is born, but we just pray everyday that God is working in our little girl to make her strong and healthy. As of now, the prognosis is good. She will probably spend a week in the NICU and then come home. Her surgery will be around 4-6 months if all goes well. I toured the NICU at Vanderbilt after my appointment. I was so relieved to see that Olivia will have her own room and we can be with her 24 hours a day if we want to be. I think they purposely don’t put beds for the parents in there so we will have to go HOME and get some rest. That’s probably a good thing. 

Also on April 5th, we met with another doctor in Maternal Fetal Medicine. She did a full ultrasound to measure everything and make sure Olivia is growing on schedule and that there are no other complications. Everything looks great. We even got to sneak a peak at her beautiful face. My dad had just told me about a dream he had about Olivia where she had big chubby cheeks and his dream was right. She is beautiful, big chubby cheeks and all 🙂

This week we sadly had to leave our OB Dr. Wingo to be transferred to a doctor that has delivery privileges at Vanderbilt. We love Dr. Wingo and trusted his recommendation to transfer to Dr. Doug Brown at Heritage Medical Group. I had already heard amazing things about Dr. Brown and he definitely lives up to his reputation. I am so thankful he is our new OB. I feel like we are in very good hands. I am also thankful that they are not wanting to induce or do a c-section unless it is absolutely necessary. I really don’t have a “birth plan.” I just want a healthy delivery.

Speaking of delivery… we watched two birthing videos in our childbirth class last night. Needless to say, I didn’t sleep very well. They say everybody has a different pain threshold. Some people can give birth with no epidural or pain medication and some people scream in agony the whole time. I really don’t know what my pain threshold is because I’ve never really experienced anything physically painful. I’ve never broken a bone or had a surgery. I’ll admit I’m kind of a chicken so I really don’t do anything where there may be a risk of getting hurt. That being said, I have no idea what to expect out of myself. We will just have to wait and see 🙂

We have less than six weeks until our sweet baby girl gets here. I can feel the nerves starting to kick in. Will I be a good mom? Will I know what to do? There are so many little things we still need to do like pack a hospital bag, wash all of her clothes and sheets, put up the baby monitor, assemble her co-sleeper, and the list goes on and on. I have two more weeks of school and then I am going into complete baby mode. I have crazy pregnant brain so I’m not sure how I have managed to maintain an A in Anatomy. I guess I just really enjoy that class. I’ve started to slow down on my songwriting. I can’t really think of anything to write about and I can’t focus. My co-writes, especially with other moms, seem to just turn into baby talk and advice sessions. I have so many awesome friends who are great mommies and they have all shared all of their favorite products and hand-me-downs with me. It is true that your friends become family and I have to say I have a GREAT family here in Nashville. We have felt very loved and supported since finding out about Olivia’s heart defect and that is a priceless gift.

I will update again soon…Please continue to keep us in your prayers.

Hope everyone has a blessed day!!!!

Rachel

 

Olivia Katharine

We feel so blessed to be pregnant with our first baby. We have waited so long for her. Every day I feel her move, I fall more and more in love with this little angel God has given us. Of course, like all couples expecting their first child, we had expectations and dreams of the day we would bring her home to her perfect little nursery, as we have watched so many of our friends do in the last couple of years. We made it past all the milestones with flying colors. The first trimester, when you’re scared if you eat the wrong thing or move the wrong way you will harm your baby, and the 20 week mark when your chances of a miscarriage are diminished. We did all the genetic testing and passed with no worries. We were on our way to a healthy baby girl.

Red flags started popping up at our second ultrasound. The radiologist couldn’t get a clear view of Olivia’s pulmonary artery. We went in for 3 more scans. Finally, he saw it and said, “oh there it is, a beautiful pulmonary artery.” As he tried to get a view of her entire heart working together she wouldn’t cooperate, so to be on the safe side we were sent to Vanderbilt Children’s Hospital for a fetal echocardiogram 5 weeks later. I have to admit I wasn’t really that concerned. I thought we were going in for a precautionary scan and everything would be completely normal. I believed we would leave there breathing a sigh of relief.

The ultrasound tech was taking an extremely long time and I felt like I couldn’t breathe. She finally finished up about an hour later and told us the cardiologist would be in to do a little more scanning. I wondered why she would need to do more scanning after I’d been laying there for an hour already. At least, we got to see Olivia’s cute little face with her chubby little cheeks for a second. The cardiologist came in and scanned for what seemed like a year to me as I started to sense that something was wrong. She didn’t say a word the whole time. When she was done she told us she was going to go find a room for us to sit down and talk. I was ready for the bad news but hoping for reassurance that Olivia was healthy. John and I waited in that room for the doctor without saying a word to each other. Fear had definitely set in.

She came in 15 minutes later and said she had found a defect in Olivia’s heart. It is called Tetralogy of Fallot. She sat there explaining it all to us. Some of it I heard and some of it I didn’t. The words I definitely heard were NICU, open heart surgery, and cyanosis. Cyanosis is when your baby turns blue. I knew this term. I had just learned it in my Anatomy and Physiology class.

We were given so much information that our heads were spinning. Now, we would not only have an OBGYN, but we would have a neonatal doctor, a genetic counselor, and a surgeon. This is not how I envisioned this going at all. My mind was quickly taken back to the emergency vet clinic where we had to put Cash to sleep just months ago and feeling all of the raw emotions of that loss, which is still an everyday battle. For those of you without pets I know it’s hard to understand, but Cash was like our son. We had never really thought we would have children so all of our love was given to our 3 amazing dogs. Losing him was the absolute hardest thing I have ever been through until now. I started feeling mad at God all over again. Why is He doing this to us? What did we do to deserve this? Why our baby? My sister has 3 healthy girls and my friends all have healthy babies, for which I am extremely happy and thankful, but why can’t I have healthy baby too? I started to feel like God was punishing me for something. I felt angry and I felt sorry for myself.  Poor, pitiful me. Why me? Why is this happening to us? It is so easy to go straight to the “worst case scenario” in your head, especially when you have just experienced a tragic loss.

Days have passed now since Olivia’s diagnosis and I feel at peace with it now. We went to church yesterday morning and our pastor’s sermon was perfectly written just for us. He said, “God is not doing something TO you. He is doing something IN you or THROUGH you.” It was exactly what I needed to hear. Olivia will not be born “perfect” but God has given her to us for a reason. She has already changed us in so many ways. I believe she will make us stronger, better people. God is not taking anything away from us. He is giving us an even more special little girl than we could have ever hoped for. We love her so much already.

I AM scared, petrified actually, but I am putting my faith in God and trusting Him completely. There is no other way to get through this. I refuse to be a victim. Olivia needs for me to be a warrior. She needs my strength and my love. She needs her mommy and daddy to be her safe place and that is what we are going to be.

Good news is… the surgery for the repair of Tetralogy of Fallot has a 90-95% success rate and we are at the best hospital with the best surgeons we could hope for. Will we have the storybook delivery and homecoming? Probably not! But this is our story and we will live it to the fullest. Every second will count!!!

We wanted to start this blog to keep our family and friends updated throughout the rest of this pregnancy and beyond.  Sometimes I will share my feelings, and sometimes it will be John sharing his side of the story. Maybe this blog will help someone else who is going through the same thing. I know reading other peoples stories has already helped me.

Please keep us in your prayers,

John, Rachel, and Olivia Katharine