Day 23: Meet Brenley and Grace

Day 23, Meet Brenley and Grace...two beautiful little girls born with broken hearts, but the spirit of fighters....

MEET BRENLEY!!!

It was late April when I found out we would be expanding our family from just us to us + 1. We 
were excited, well I was nervous and excited, but my husband wouldn't speak of it until he saw a baby on the screen at the doctor’s office. The next week we had our first appointment. I wasn't sure how far along I was since my cycle was playing tricks on me. I could have been 5 weeks, 7 weeks or 8 weeks from my calculations. I was 5 weeks. The doctor saw just a yolk sac, but scheduled me for 2 weeks out. The next week I started bleeding and was devastated, knowing this could mean something not good. I called the doctor and he said come straight in and did a sonogram and said take it easy, but everything looked ok so far. We kept my appointment for the following week, however 2 days before I would have heavy cramping & bloating followed by gushing blood. I called the nurse line and they said to come in if it got worse or if it didn't or went away to come in the morning. I was fine till morning despite not being able to sleep (Little did I know this would be the first of many sleepless nights & not from her being up to feed- just the worry). I made my way in the doctor’s office to see the next available doctor as mine was on vacation, she was wonderful! The wait was agonizing seeing all these women walk out with big baby bumps and smiles on their faces. I wasn't showing of course, but none the less it was hard. She did a sonogram and BAM there was the heart beating strong as could be! My husband wasn't able to make it and was on the phone and got to hear her heart beating PERFECTLY! I went home to go back in 2 days for my scheduled appointment and then every 2 weeks until my 14^th week still bleeding…… Then it stopped, my pregnancy became enjoyable, I was able to do more and not be on strict rest- But I still worried. Month by month appointments, 2 weeks, and then 1 week appointments. Our baby’s heart beat was perfect. Our gender scan at 18.5 weeks showed the baby was a GIRL! Brenley Rose would be her name. Her heart was perfect in the ultrasound- 4 chambers, beating great, loud & strong. Everything measured up. The defect was already there, but had I been in that position a week later, they would have seen everything and prepared us for what was to come. 38 weeks & 5 days- the doctor kind of shook his head and made a funny face when he was listening to her heart beat. I asked what was wrong and he said it was her positioning that made her murmur louder and all babies have them at birth and it goes away- I have read that before so I was fine with his statement. He also told me when he saw me the next week that we would do another sonogram to see how big she was because he thought at that point she was 8 or 9 pounds and didn't want her getting too big. It was strange to hear him say that since he told me all along that I needed to eat, eat & eat some more because I was not gaining much weight. Fast forward Christmas night 2010- things started happening around 7pm just before my Mom brought us dinner from our family Christmas that we did not attend 2 hours away “just in case”. I ate, we talked, nothing else really happened and we settled in for the night after my mom went home. 5am the next morning my water broke, (December 27, 2010) 28 hours later Brenley Rose made her entrance into the world. It was scary, exciting and exhausting. The wait was the hardest part even though at some point the Demerol put me into a nice slumber. She was born not crying, no screaming, no noise, nothing but ALIVE!!! I thought it was odd, but the nurses knew what they were doing. She tried to nurse, but never latched, she never cried, just stayed quiet as we stared at her and invited our parents to come in and see her.  We had her in our room for about an hour until the nursery came to get her. Our parents & my husband decided to grab breakfast while they moved me to the postpartum floor. They all went to the window to see her again in the nursery and suddenly they closed the shades and said they needed to do some testing. My mom immediately thought something was up, but never said a word until afterwards. “She just laid there and didn’t move” was all she would say later. The nurse came running back to my delivery room and said she had to tell me something and who did I want in the room… My mom was the first one back and I called my husband. She told us Brenley was having a hard time adjusting to room air and was put in transition where she had a 2 on 1 team to help her get used to living outside the womb.  She had several apnea episodes & stopped breathing so they were bagging her when they wheeled me in to see her. She stopped breathing after they got her going again. I cried and they quickly took me away. Did I mention I was bleeding profusely and in question of needing a blood transfusion since my placenta dried up and stuck to me all the while this is happening? I told them I would try to pass the remaining pieces because I didn’t want to be put out for a DNC and away from my baby any more than I had to be. The next day I finally did, but back to her. Later that night the head Dr. from transition came and talked to us and said she would like to do a spinal tap and needed consent. I declined signing the papers and made my husband do it. Nothing came back from it and I was worried that they did it for no reason and could have caused something more severe. The next day we went and saw her in the NICU where she was on oxygen & a NG. I was up pumping every 2 hours to make that liquid gold.  After not being able to urinate since I had my catheter taken out shortly after delivery, I finally did when I passed the remaining placenta pieces. That afternoon around 5 we got a call in my room saying we had a meeting with a Dr. Patel at 6 by the NICU in a conference room. We arrived a few minutes before and left our family behind in my room. The attending nurse came in and slammed down a box of tissues and said the doctor will be here shortly. I was mad, angry, upset, emotional and pissed off at her tone of voice when she was to be caring for my child. Dr. Patel came in with Trisha (the nurse) and started telling us how Brenley had what was called Tetralogy of Fallot and it is usually caused by DiGeorge syndrome. He assured us she did not have DiGeorge due to her facial looks, but they would test her anyways. He said she would need open heart surgery, my heart sank and I wailed out through the tears. He showed us pictures, said he would have the best care for her and assured us she was in good hands and said DO NOT GO HOME & DO RESEARCH! I didn’t do research and still have done very little. Dr. Patel came to be one of the best people in our lives when it came to Brenley’s care. She was in the NICU for a week and they sent us home. She had her first heart catheter at 7 weeks. Her femoral vein collapsed and her leg was purple. They put her on a heavy dose of Heparin to get her cold purple leg back to normal. It took almost 24 hours and a conference about putting her on TPA and the side effects it caused for her leg to finally get a pulse and have a warm feeling again. Her surgery was to be done at 3-4 months, but she wasn’t growing so they kept pushing it back. 5 months came and Brenley started vomiting over & over again until she would have a “tet spell”. We had been warned of this and instructed to crunch her little body knees to chest and start CPR if needed. She always came back from the crunches. We whisked her an hour away to the hospital we knew so well and had taken care of her taking a chance because the closest hospital did not have knowledgeable staff or the equipment and would fly us out anyways. We showed up at the hospital with her barely conscious and satting in the 70’s. She was put on O2 and IV fluids and immediately perked up. We had a weeklong stay and no explanation of why this happened. She acted fine all day before this. They sent us home after a week with no oxygen, no pulse ox, just us as we had arrived. We were home for one week when she did it again and we landed in the hospital for another week. At some point they came to do a EKG & Echo and the on call cardiologist from our office came in to tell me that she was re-diagnosing her with DORV- Double Outlet Right Ventricle. WHAT?!?!?! How can that be? All the other doctors agreed it was ToF upon conference. Wasn’t she there for that? I immediately called for Dr. Patel and told him of the news. He came to her room as fast as he could cross the street from his office to the hospital. He was not a happy man and assured me it was not DORV, but she had some of the DORV features that were also part of ToF and the other doctor did not look from the beginning and just did a once over. I trust him and believed him. He said her body could not handle the shunting of blood in the wrong direction and said we would be going into surgery as soon as the surgeon got back from out of the country. Instead, they sent us home for another agonizing scary week with an oxygen & pulse ox machine. Brenley turned 6 months old and we cherished all the time we had with her before I lives would be even more turned upside down. They canceled and moved her surgery up 3 times to get her in. July 1, 2011 was her surgery. I cried the whole way there just as I did the morning of her heart catheter. We got there at 5, met other people in the waiting area and they all asked what we were having if we minded sharing. We told them she was having open heart surgery to repair her heart defect until her next surgery was due when she was what we are still hoping a lot older. They were there for tonsil removal, ear tubes, etc. and just amazed by the strength we showed. Not sure where it was because I didn’t see it. We went to the general holding area, then to the heart surgery area where our waiting neighbor would be an elderly woman having bypass surgery. She said how sad she was for us to have to go through it. The nurses came to meet us and prayed with us. We walked her to the OR door and handed her off. Turned around & fell to the ground crying and holding each other. As passersby probably thought we were crazy, we just prayed that all would be ok, they had no idea what we were going through. We went to the waiting area where people came & went for some in & out testing. Some asked where our baby was since I had her diaper bag, my pumping bag and obvious baby things. We told them she was in OHS and they wanted to know more. I cried and we jumped every time the phone rang waiting for an update. Surgery went well, she came out un-intubated!!!!!

 We left the PICU after 3 days when she had a fit and we couldn’t get her heart rate down. Finally she was stabilized and we were on our way to recovery. She stopped eating….. it was a struggle, there was talk of a G-tube. They finally put in an NG and prepared us for feedings at home, but she was still on oxygen so it kept us there.

 She was eating 15mls a day so they sent us home after 10 days and 2 days off oxygen with a check up in 2 weeks.

After being home for 2 days and struggling to get her to eat and fearing another hospital admittance for dehydration I called the doctor and asked if we could take her off lasix- I had heard it deterred the appetite. He sent us for a check x ray to make sure the fluid was clearing and ok’d it. 24 hours later she was eating at a normal rate again making progress with each feed.  The surgery left lots of scar tissue and she needed another heart catheter in November 2011. It was a breeze after it was done, but of course taunting before. She has done well since then. We see her cardiologist every 6 months and are due back in April. He mentioned last time she may need a lung study & heart catheter this time due to her lack of growth in the part they ballooned in November 2011. She has developed high Premature Ventricular C’s since her heart surgery that they monitor every 6 months and have told us how to keep up with her in case she showed signs of struggling with it.  She does well and is VERY ACTIVE!!!!! I now wonder if all the problems in the beginning of my pregnancy were my body trying to miscarry her due to its knowledge of the defect. I am glad I didn’t lose her and wouldn’t change it for the world except for her not having to go through all of this. She is a feisty little red head with a huge personality and will persevere! My husband says she is stronger than most grown men he knows and I have to agree.

MEET GRACE!!!

Grace-6lbs 5oz and looks perfectly healthy. Never would have thought her tiny little heart would not be perfect. Pre Norwood picture.

Grace was born on Dec. 23, 2008 and has HLHS. I love to share how Grace was named. At our 20 week ultrasound, we were told there was something severely wrong with her heart. We were devastated. As my husband and I drove home that day, silence filled the car. Then, out of no where, I heard a voice say, "Name her Grace". That surprised me, as we had already named her and told the family and Grace was never on our list of names. Within seconds, my husband turns to me and says, "we are supposed to name her Grace". Chills ran through my body and I asked him what made him say that. He said, I just heard a voice say, "Name her Grace". I said, I just heard the same voice. From that moment on, her name was Grace. We knew without a doubt, God had named our daughter and He knew her, before she was born. We knew God had a plan for our sweet girl and to this day, He continues to show us just that. She touches everyone she meets and has a greater impact on this world, than I could have ever imagined. I just love her to pieces. Grace is approaching her Fontan this spring. You can learn more about Grace and her journey at www.heartofgrace.net

Post Norwood. Had her Norwood at 4 days old.

Enjoying the beach, post Glenn. Had her Glenn at 5 1/2 months

Grace meets Mickey for the 1st time on her 4th birthday. She is doing great...still pre Fontan. She is scheduled to have her Fontan in April or May of 2013.

Grace is a great big sister!