Once again, my blogging has come to a stand still. I have accepted that I'm not very good at it. However, there has been so much going on in my life and my heart is very full. I know that sounds dumb but it's true. I have to write what I'm feeling just so I can get it out! Anyway, as many of you know, my baby girl arrived! She came on May 23, 2013. She is my little super baby. My heart hero. Here is her story:
The Delivery
On May 22 I had my 39 week doctors appointment. I was done. Finished with the whole pregnancy bit. I felt huge, sick, tired, etc. I was dilated to a 3, so my doctor agreed to induce me. I would be induced the next day at 6:30 AM.
So I was induced at 6:30 AM. My doctor broke my water at 8:30 AM. At around 12 something my nurse announced that I was fully dilated and ready to deliver. I was beyond excited. A few pushes and baby girl made her arrival at 12:44 PM. A cake walk compared to my first delivery that took 19.5 hours. Miley Ann Stembridge weighed in at 6 pounds 10 ounces and was 18.5 inches long. Kolby and I were both in love!
We were quickly wheeled up to the postnatal floor and visitors started coming. Hudson wasn't sure what to think about the whole thing and wanted out pretty quick. By the end of the day I was exhausted, but I was determined to keep baby girl with me all night long. However, Kolby saw how tired I was and insisted that she stay in the nursery for the night so I finally agreed. At around 5:30 AM my nurse came in and told me that my baby was in the NICU. There was no need to worry she said. Her coloring just changed a little she said. They were just going to check her out she said. Everything would be fine she said. We quickly went down to check on our little bundle of joy. She seemed fine to me. I held her for awhile and then was so exhausted and sick that I headed back upstairs for a nap. I showered and then slept all day. Kolby stayed with the baby. Once I awoke, I called Kolby to come and help me back down to see my baby. As soon as I got down there the doctor, Dr. Rogers, came in.
Now let me just say something about Dr. Rogers. He is a super hero in our family. When he was checking Miley out, he could just hear a faint murmur and wanted to investigate further. Still to this day, he calls her a miracle. The notes from Primaries say they couldn't hear anything weird. Even he said that he couldn't hear it anymore when I came back a few days later. It was truly a miracle from Heaven, another tender mercy from the Lord, and it took a very special man, Dr. Rogers, who listened and acted, to save my baby. Otherwise she would have returned home and gotten very sick or worse, which is what happens to lots of babies with TAPVR.
Dr. Rogers told me that they had been checking her out all day and had been corresponding back and forth with Primary Children's Medical Center in Salt Lake. As Kolby and I sat there and listened to the doctor, I feared what he was going to say. He told us that our baby had something called total anomalous pulmonary venous return (TAPVR) and that she would need open heart surgery. The blood wasn't flowing correctly in her heart. She would need to be life flighted immediately to Primary Children's in Salt Lake. My world came crashing down at that moment. All I could do was sob and hold my baby close. So many things were popping into my brain. How could this happen? What had I done wrong? Why is this happening to
my baby? After that things were a blur. My nurse came down immediately and started discharge papers while Kolby went to pack up our things. Kolby and his dad quickly gave Miley a blessing. I don't remember what was said but it comforted me. Right after the blessing, life flight arrived and started strapping my baby into a big incubator. I gave her one final kiss and they wheeled her out to the helipad. We followed and watched as they loaded her into the helicopter and flew away. That was one of the hardest moments of my life. I felt so helpless as I watched my baby, who for nine months had been with me every day, fly away from me. I was terrified.
We left the hospital, ran home to shower and pack a few things, and headed down to Salt Lake. Hudson would stay with my mother-in-law and meet us in Salt Lake shortly. My parents were there when we arrived and much to my comfort had been there when Miley arrived too. We headed back to the cardiac intensive care unit to see our baby. It was dark and quiet back there. One nurse watched my baby intently all the time. Finally, a doctor came in and explained a little more about Miley's condition. TAPVR is a rare, and as far as they know random, heart condition but one that can be fixed. It would definitely require open heart surgery. He gave us a diagram similar to this one, the only difference being that Miley had the cardiac kind (blood drains to the coronary sinus) and not infracardiac:
They wanted to watch her for a few days and then, if she seemed stable, would send her home for a month to grow and become stronger. As scared as I was to take her home, I knew it was for the best so she could be as strong for her surgery as possible. The next day, Saturday, Miley was moved upstairs to the surgical unit to be monitored for a few days. A long few days. I was exhausted from just giving birth, confused, missing my baby boy, and just plain overwhelmed. On Monday we finally got discharged and made the journey home.
Home
Once we were home we tried to get back to business as usual. If that was even possible. Hudson came home and adjusted the best he could. It was a hard situation for us to figure out, let alone a two year old. He did pretty good though. It was me that was a mess. I went through so many emotions during that month. Gosh it was a long month. My emotions went from fear to sadness to anger and back again. But mostly I was just scared. I wanted to just run and hide in a dark corner and have someone come tell me when it was all over. I knew I couldn't do that though. That's the hard thing about being a mom. You have to face things and be strong when you may not want to because you have another human being that is depending on your strength. In this case, I had two. I tried to cry in private so Hudson wouldn't see. I tried to not dwell on the what ifs and what mights and focus on the moment. We finally got a surgery date. She would have surgery on July 3. We saw our cardiologist, Dr. Arrington, a few weeks before surgery and he sent Miley home with oxygen. It felt like a step backwards in my book but I kept pushing forward the best I could.
As the month progressed, we found out more about what the surgery would entail. Miley would first get her anesthesia, a breathing tube and drainage tube. The incision would then be made, her breast bone would be sawed through, followed by being put on bypass and having all of the blood drained from her heart. After the repair, the blood would be put back, bypass would be taken off, her breast bone would be put back together with stainless steel wire, the incision would be stitched, and she would be warmed back up. The stainless steel wire will remain in her body forever. There was a chance, if they hit the electrical current in her heart, that she would also leave with a pacemaker. When I heard the details of her surgery, I was even more sick and overwhelmed. I couldn't imagine all of this happening to a little baby.
My little baby. I was overwhelmed to say the least.
I had lots of help from family, friends, and neighbors though. We had several ward members bring meals and the bishop and relief society president stopped by. Friends came bearing gifts and our chatting helped to get my mind off of things for a few hours. Our families helped immensely. Kolby's mom seemed to show up right when I needed a break. My mom is amazing and helped me so much. Even if her helping was just talking to me on the phone as I cried. She is awesome. I love her! I have a wonderful husband too. He always believed everything would be ok and was really the strength for our family. I'm so grateful for him. It was all of these people, along with a loving Heavenly Father, that helped my little family get through a long and hard month.
The Surgery
We were supposed to check in at Primary Children's on July 2 for lots of preoperative tests and evaluations. The night before, Kolby's family came over for dinner and to get Hudson. Before leaving, Kolby gave Miley a beautiful blessing and Kolby's brother, Brayden, gave me one. The spirit was strong and I immediately felt calm about what was to come. We drove down to Salt Lake the next day and got all of our tests done. We had extra time to kill so we visited my grandparents in Draper and went to dinner with my sister Candace and her fiancé Chris. They were kind enough to let us stay in their vacant apartment while we were in Salt Lake. We went back to the apartment, bathed Miley and did all sorts of yucky (but required) swabbing and such, took a few pictures, and went to bed.
I knew it would be a long night. After midnight she could not drink anymore milk. All she could have was pedialyte. She hated it. I did too. Early on the morning of July 3 we checked in for surgery. It didn't seem real to me. It was like a bad dream. They took her back to a small room where they changed her into surgical clothing.
We were then taken to another waiting room. This one was very quiet. There were several other children waiting with their parents to go back to surgery. We found an unoccupied corner and just waited. It seemed like forever. I just held my baby as close as I could during those moments. Periodically, we had people that were part of the surgery team come by and introduce themselves. I don't remember much about them. They gave us a pager so if we left the surgical waiting room, they could contact us. Finally, the surgeon came in. Dr. Eckhauser. He is also a super hero to us. I am eternally grateful for this man. He saved my baby. He went through all the risks of surgery with us, which had me crying again. I knew though, after speaking with him, that my baby was in good hands. He left and the anesthesiologist, Dr. Hannon, arrived. I knew he was a good one because my cousin, Wade, who is an anesthesiologist there, told me so. After we spoke, we followed him to a big set of glass doors. This was the drop off area. The moment I had been dreading for a month. Sobbing, I handed my baby over to Dr. Hannon and he left. I tried to pull myself together and we went to the waiting room.
Waiting
There were many other families waiting for their children that were in surgery. Many of them came and went while we were there. The doctor said the surgery would take 6 hours or more, so we would be there for awhile. They called with updates every hour or so. There was a desk where a receptionist would answer the phone, call out "parents of Miley" and one of us would go talk to the surgical staff. That happened a few times. We had many people there to keep us company as we waited. My parents, Kolby's mom and grandparents, and my brother were all there. It was nice to have people to chat with as we waited. We are so blessed to have such good family. Finally, the call came that they were finished with the surgery. They were wheeling her to the CICU. The surgeon would be in to talk with us momentarily. We could see Miley in about an hour. The surgeon came. He said the surgery went great. He was able to repair what needed to be fixed. No pacemaker was needed. The surgery didn't take as long as expected because they had to put her on bypass quicker than they would have liked. Her blood pressure was high. They were going to give her medication to try and keep her blood pressure down. He would come by and check on her later.
Post-surgery
We were finally allowed to go back and see our baby after an hour or so. The first time I saw her is a picture I will never forget. Although I would kind of like to. She was connected to about 16 monitors. She had a breathing tube down her throat. A chest tube draining fluids came out of her belly. She had a huge IV coming out of her neck and a few more on hands and feet. It was very hard for me to see her this way. She was still sedated but her eyes were open and moving. When she heard my voice, she flinched and tried to look for me. I just wanted to pick her up and hug her and tell her everything was going to be ok. But I couldn't hold her. Not until the breathing tube could come out, which would probably be a few days. Kolby and I sat in the room for quite awhile, looking over her bedside, chatting with the nurse, and mostly just sitting in silence. Our families were out in the waiting room so we went and sat with them too.
After a long day, we left Miley with her nurse and went to get some sleep. The next day we sported our "Team Miley" shirts that my sister made and went back to sit with her for another long day. Hudson came. He loved the hospital by the end of our stay because he could drive a little car around everywhere. My parents, siblings, and grandparents came. Kolby's mom and sister did too. She got her breathing tube out that day! It was so nice to hold her and actually
feel that she was ok.
That night we watched the fireworks with Hudson on top of the hospital roof. It was also something I won't ever forget. Here we had two beautiful kids that we could go home with in a few days and we were surrounded by lots of kids who were very sick, some that would maybe never go home. The thoughts broke my heart and Kolby and I were secretly glad when Hudson got bored and wanted to leave. It was a sight that really humbled us and made us grateful for the little heart hero we had downstairs.
The next day my mom visited. My friend Alyece and cousin Wade, who both work there, also stopped by. Miley did so well all day that in the evening she graduated to the surgical unit on the third floor. This was a huge deal! Her chest tube was taken out and we walked her, with the nurse, up to her new home. I was amazed at the progress my strong girl was making!
After getting settled in upstairs, we let her get some rest and left for the night. The surgeon came in as we were leaving, just to check on his patient and to answer any other questions we had. His visit reminded us even more how blessed we were that Miley had such great doctors.
The next day, Saturday, we had several visitors, including my good friend Whitney and Kolby's parents, siblings, grandparents, and aunt. We took Hudson to the zoo while Kolby's mom held Miley. We went on a quick date that night. I felt guilty the whole time I was away from her but it felt nice to finally be able to go somewhere and not worry. She was in such good hands at Primaries. What an amazing hospital it is! We are so lucky to have it right here in Utah.
On Sunday they gave us the go ahead to be discharged. I couldn't believe it! She was such a trooper and in four days had gone from open heart surgery to home. I was so proud of her and so grateful to my Heavenly Father for helping her to recover so well. It was truly a miracle!
Home Again
We are now, for the most part, back to real life. Miley is doing awesome. She has gone from the 6th percentile to the 39th in her weight and gets chubbier every day. This whole experience has taught me so much. I have learned patience through affliction, love of family and friends, humility, how supportive and caring people (even strangers) can be, gratitude, how to count my blessings daily, and so much more. I have learned, even more, how blessed I am to be a mom to two beautiful kids. It's not always easy but so worth it. And the thing I learned most is how much my Heavenly Father loves me. I always knew that He did but am even more reassured. He was there for me on days that I struggled greatly, when all I wanted to do was hide under my covers. He sent people to help me when I needed it most. He comforted me whenever I asked for comfort and even when I didn't. I am truly grateful to have the knowledge of a loving Heavenly Father who watches over me when both the big things and small things happen in my life. And thanks to all of you that visited, texted, called, Facebooked, messaged, sent things, etc. It meant more to me than you know! My heart is truly full!
