So, the funeral is over, and our new "normal" begins. What is "normal" anyway? What I realized that year is that life would never be the same. Adjusting to that new "normal" was very difficult. This journal entry reflects life about one month after London died. Jonathan and I returned to work after 5 weeks, and began facing people and situations for the first time since her death. Also, I had emailed London's surgeon about her autopsy, and he replied by explaining what they had found and what they had learned from our baby's condition. It was so very important to me - especially then - that something would be learned from London's case. I needed to know that her death was not in vain...that she wasn't just another HLHS patient who was gone. I did find comfort in Dr. Manning's email. I have attached our communication - which is included in my journal entry. I have chosen not to modify my journal entries, mainly because I want to share my raw feelings from that time.
October 15, 2007 (Monday)
This was my and Jonathan’s first day back to work. It was a professional development day, so we had to go to separate schools for training. I had a couple of people ask me how my baby was doing. That was the first time I had to answer that, and it was tough. I remained strong while sharing the news, and both individuals felt terrible. I felt bad for them because I know they didn’t want to hurt me. Anyway, again that’s part of all this. I also was aware that people at our school had been given advice on how to treat us when we came back. Many felt that they didn’t need to say anything to us so that we would not be hurt. I shared the following email with our staff so that they would know how we wanted to be treated, regardless of the advice that they had been given.
Everyone,
I just want to say that Jonathan and I truly appreciate all the cards, flowers, phone calls, hugs, etc. that all of you have given to us. We are looking forward to getting back into our normal routine after fall break and getting to spend our day with you all. I am not aware of the advice that you have been given regarding our return, but if I could simply say a few things from my heart. First of all, feel free to ask us how we're doing. Feel free to tell us what you thought about our beautiful daughter. My biggest fear is that her precious, yet short life will be forgotten. As her mother, I am honored when someone admires her, talks about her, and shares their feelings to me.
Of course, Jonathan and I don't want to sit around and be depressed forever. We don't want to be sad every minute of the day, but we also don't want you to feel that you can't mention it or acknowledge it. This is a huge, defining experience in our lives that does not have to be ignored, and we don't want it to be ignored. In other words, don't feel that you have to ignore it in order to "help" us. London is on our minds all the time, and knowing that she might be on your mind at some point shows us that she is being thought of and remembered.
I just wanted to share that. Again, thanks to all of you for everything you've done during the past 5 months. We love you all and are so proud to be a part of such a wonderful work family.
Love,
Ashlee and Jonathan
That night, I also decided to email Dr. Manning. I just felt this need to know what was found during London’s autopsy. Here is the email that I sent to Dr. Manning:
Hello Dr. Manning,
It's been nearly 5 weeks since my precious daughter, London Cloe Tomes, passed away at CCHMC. I don't know if you remember, but she did not survive the Norwood procedure on Sept. 13. Just to help with my closure, I was wondering if you have studied her echocardiograms to see if there was evidence of the 2 unknown blood vessels on her pulmonary artery. I understand that even if we had known about them, you wouldn't have even been able to attempt her surgery. However, as her grieving mother, I just want information on the knowledge that you have possibly gained through London. It is comforting to know that in the midst of my grief and sadness, that hopefully London was a pioneer for future HLHS patients with the same complication. I would greatly appreciate your reply, even if you have not studied her case. Thank you again for doing everything in your power to give her a chance at life.
Sincerely,
Ashlee Tomes
October 16, 2007 (Tuesday)
This was our first day back at school in our classrooms. All of the students in the school were previously made aware that London had died so that they would be prepared when we came back. Many students gave me hugs and said they were sorry that my baby died. Truthfully, all the students were so sweet and none were inappropriate about the situation. Some of my little ones said things like, “I’m sorry your baby died” or “Why did your baby die?” However, I didn’t have anyone ask how my baby was doing. They were all very respectful of the situation, even the youngest students.
I had a good day until my planning at 12:00. Thankfully, my substitute Pam Copelin had planned for my returning week so I wouldn’t have to worry about that. Unfortunately, that meant that I had nothing to do during my planning, so I began focusing on London. As I read so many sweet emails and thought about the last 5 weeks, I just couldn’t help from becoming emotional. Then, I noticed an email from Peter Manning, London’s surgeon. He replied to my email that I sent the night before. Here is what he said…
Dear Ashlee,
I certainly remember London. She and you have been in my prayers. I was able to view the dissection of the heart during the autopsy which greatly helped our pathology colleagues understand the anatomy we had discovered in the operating room. I also had the chance to scour the medical literature to try to identify if a similar abnormality associated with HLHS has been previously seen by anyone. The cardiologists who read her echos also went back and reviewed them after learning what we found in the OR, and our Heart Center team discussed all of this information at our most recent complications conference a week ago.
The examination of the heart confirmed what we suspected in the operating room. The two small arteries that arose from the back of her left pulmonary artery were in fact the two main coronaries supplying the left side of her heart (which includes much of her right ventricle as well). There were no other branches arising from a normal position on the aorta that supplied the same zones of the heart. I have found reports of a few other cases of similar anatomy, though in all these cases it seemed like the anomalous coronary arose as a single trunk, rather than two separate vessels, and all the cases I found described the anomalous coronary arising from the right pulmonary artery, none from the left as in London's case.
Repeated review of the two echocardiograms she had preoperatively do not identify the anomalous coronary arteries, and in fact show an artery which looks exactly like a normal left coronary arising from a normal position on the aorta, a finding which is hard to understand and quite frustrating. In our discussions about this anatomy, we recognize that if such an anomaly had been identified preoperatively there may have been a different variation we could have been employed for our reconstruction, or we may have recommended considering transplantation as an alternative to staged reconstruction. I don't recall that any of the other patients I found in the medical literature with similar anatomy survived a reconstruction attempt.
This is certainly a case that we learned a great deal about, and I am confident that this knowledge will be able to be applied to enable us to better care for such complex cases in the future.
I hope this information helps bring some closure for you. London was a precious child who was deeply loved. Please let me know if I can help in any other way.
Sincerely,
Peter Manning
His email was so detailed and informative, so I appreciated that, but it also was a reminder of my loss. That added to my emotional day. This was my final reply to his email:
Dear Dr. Manning,
Thank you so much for taking the time to give such a thorough explanation of what you have found in London's case. It is so ironic and somewhat surreal to me that London's case seemed so "textbook" and "standard" to everyone, yet in the end, it was something that no one has ever seen. However, I find comfort in knowing that you and your team have carefully examined her case, and that London is definitely a pioneer for future HLHS patients with the same or similar complication. Although research and medical advances for HLHS have already come so far, I see that there is still so much more to learn.
I imagine that this is not a fun part of your job. However, you have proven through your sympathy and kindness in the waiting room that night and in your email that you are a man of character who cares about your patients, their well being, and their families. Thank you for praying for us and for keeping London "alive" through the research and knowledge that has been gained because of her. I will also continue to pray for you, just as I did every day prior to London's surgery. I pray that God will guide your hands as you transform little hearts, and that He will give you the strength, courage, peace, and perseverance to do the amazing job He has blessed you with. I can only imagine the lives that have been touched and forever changed because of you and your team. Although my life has been forever changed in an unfortunate way, I know without a doubt, that she was in the best care possible, and I have peace because of that.
You and your entire staff were so kind, positive, encouraging and professional to me and my family. I pray that I never have to come back to CCHMC, but I will never forget how wonderful everyone was during our 5 month journey. Thank you again, Dr. Manning, for going above and beyond to care for London and to help bring some closure to one aspect of our grief. Take care and God bless you.
Sincerely,
Ashlee Tomes
I chose to look at her pictures that Alaena had emailed to everyone the day after she was born. The title of the email was “London is here!!” It was full of excitement, anticipation, and hope. To know that London was not here any more was just so hurtful.
Once I became upset and submerged in my grief, I also wanted to view the video of London that Kyle had produced and emailed everyone the day of her surgery. I had not received it through email, so I had Mom to send it to me. I sat here at my computer and wept as I watched it. The background music was so pretty, and just seeing her daddy hold her, her little hand stretch out, and her chubby cheeks just lying so peacefully, I just ached for her. The video was taken approximately one hour before her surgery. Kyle had emailed it during her surgery, before we knew that she did not make it through. I will forever be grateful that Kyle took the time and effort to create that for us.
The rest of the day was very difficult for me. I just couldn’t get it together, and I think it was very hard that life was back to “normal”, yet our normal was so “not normal”. This just wasn’t the plan! I thought London would be home by now. As one girl on the blog that I previously mentioned said, it’s as if someone pushed the rewind button on my life, and I’m back where I was a year ago. This is so hard.
Thursday, April 30, 2009
Tuesday, April 28, 2009
How sweet it is...
Have you ever wondered just how in the world a conversation ends where it does? Well, that happened yesterday with me and Jagger. We were in the car, and was listening to my Third Day CD, and on one of the songs, Jagger yells, "Oh yeah! I LOVE this song, mommy!" I told him that the song was about Jesus, and he then asked me to tell him a story about Jesus. Well, I thought that was just precious, so I asked him what story he wanted me to tell him. We have a "Passion of the Christ" coffee table book at home, and since Jagger has noticed the vivid pictures of Jesus carrying his cross on the cover of the book, he asked me to tell him about 'those mean guys who hurt Jesus'. So, I began to tell him the simple story of how Jesus loved everyone, but some people didn't love him and didn't believe that he was God's son, etc. Then, I explained that they put a crown of thorns on his head that hurt really bad, and they took nails and nailed his hands and feet to a big cross, and he died there. As I explained this in the most child-friendly way possible, Jagger began to show anger on his little face. He interrupted me as I told him the story, and he said while making a fist, "Mommy, I'm gonna get those bad guys, and I'm gonna punch 'em right in the face because they were mean to Jesus!!" I told Jagger that Jesus wasn't even mad at them when they were being mean to him. Well, that just threw Jagger for a loop because - in his mind - how in the world could Jesus possibly NOT be mad at those mean people for doing such awful things to him? I mean, even a 3 year old can sense when revenge is necessary!! This just reminded me how incredible it was and is that Jesus loved them and loves us even when we deny him, hurt him, push him aside...you name it. He doesn't even get mad at us! He loves us anyway. Here, my 3 year old was showing his human sinfulness by wanting to punch those mean guys in the face, and I'm clearly reminded of Jesus' perfection and how lucky we are that he forgives us when we are so tainted!
After Jagger was thoroughly taken back by the story of Jesus' crucifixion, I told him the "good" news...that 3 days later, Jesus came back to life! Jagger's eyes lit up, and he got so excited, like Jesus was the coolest SUPERHERO of all! He said, "That is so awesome!" That's his latest phrase, by the way :) Anyway, I went on to explain to him that Jesus died on the cross and came back to life so that we could go to heaven some day and live forever and ever with Him!
It was so neat to explain the story of Jesus to Jagger for the first thorough time and actually see him respond with feeling and understanding! He's 3 and he got it! Now, of course it's as simple as it can be for him, but the story of Jesus is simple enough that even a 3 year old can "get it"! How awesome!
Then...when heaven came up, Jagger reminded me that baby London was in heaven. Then, as he often does, he began to tear up and grieve his baby sister. I then reminded him, without tears I might add, that when we go to heaven some day, we'll get to see baby London and be with her forever and ever and ever! And we'll get to see Nana and Papaw Key and baby London's friends who she plays with in heaven...and we'll get to see Jesus and God and the streets of gold...and angels... Man, what a beautiful place I described to Jagger! It's like he was listening to a fairy tale as I explained heaven to him! His tearful eyes began to brighten as I continued explaining all the 'cool' things about heaven. He then asked me, "When I go to heaven some day, can I hug baby London when I see her?" As you can imagine, I suddenly had to hold back my tears. "Yes, honey, you can hug baby London. You can play with her and talk to her..." He smiled and even laughed out loud with excitement! Then, the sweetest thing happened. He turned to Jack and in a high-pitched voice (that he always uses when talking to his baby brother), he started telling him about heaven and that London was there and some day they can play with her and hug her and see Jesus there... He went on and on - just explaining all of that great news to his baby brother! It absolutely melted my heart as I stared at the road in front of me and listened to my sweet boy relaying such a beautiful message to my newborn. Now, moments like that are when you realize that God doesn't have to move a mountain to prove his presence and his power!! I love being reminded of his goodness.
After Jagger was thoroughly taken back by the story of Jesus' crucifixion, I told him the "good" news...that 3 days later, Jesus came back to life! Jagger's eyes lit up, and he got so excited, like Jesus was the coolest SUPERHERO of all! He said, "That is so awesome!" That's his latest phrase, by the way :) Anyway, I went on to explain to him that Jesus died on the cross and came back to life so that we could go to heaven some day and live forever and ever with Him!
It was so neat to explain the story of Jesus to Jagger for the first thorough time and actually see him respond with feeling and understanding! He's 3 and he got it! Now, of course it's as simple as it can be for him, but the story of Jesus is simple enough that even a 3 year old can "get it"! How awesome!
Then...when heaven came up, Jagger reminded me that baby London was in heaven. Then, as he often does, he began to tear up and grieve his baby sister. I then reminded him, without tears I might add, that when we go to heaven some day, we'll get to see baby London and be with her forever and ever and ever! And we'll get to see Nana and Papaw Key and baby London's friends who she plays with in heaven...and we'll get to see Jesus and God and the streets of gold...and angels... Man, what a beautiful place I described to Jagger! It's like he was listening to a fairy tale as I explained heaven to him! His tearful eyes began to brighten as I continued explaining all the 'cool' things about heaven. He then asked me, "When I go to heaven some day, can I hug baby London when I see her?" As you can imagine, I suddenly had to hold back my tears. "Yes, honey, you can hug baby London. You can play with her and talk to her..." He smiled and even laughed out loud with excitement! Then, the sweetest thing happened. He turned to Jack and in a high-pitched voice (that he always uses when talking to his baby brother), he started telling him about heaven and that London was there and some day they can play with her and hug her and see Jesus there... He went on and on - just explaining all of that great news to his baby brother! It absolutely melted my heart as I stared at the road in front of me and listened to my sweet boy relaying such a beautiful message to my newborn. Now, moments like that are when you realize that God doesn't have to move a mountain to prove his presence and his power!! I love being reminded of his goodness.
Monday, April 27, 2009
Lots of Celebrating!
Jonathan, Ashlee, Jagger & Jack
"Peace!"
Jagger & Grandmommy landscaping
Jagger & Reese
Alaena after her marathon
Mom...thoroughly embarrassed!!
We had a great weekend, and had lots to celebrate! First of all, Friday was Mom's birthday, so we ate at a Mexican restaurant and, as you can tell by the picture, they made the whole restaurant watch as she wore a huge sombrero and we sang Happy Birthday! Yes, she was embarrassed. Then, Saturday, my sister Alaena ran her 2nd marathon in Louisville (Derby Marathon). I am so proud of her! I think she's nuts...I mean, I don't even like driving 26.2 miles, more or less RUNNING that!! Anyway, she finished and did great :) Saturday night, we went to Reese's 3rd birthday party. It was so fun, and Jagger had a great time. Brittany and I are already planning for when Jagger and Reese get married! Ramsey and Jack are the same age, too, so that could work out!! Sunday was beautiful, so we spent all day outside after going to church. Jagger helped Grandmommy plant flowers, he played in his sandbox, and Jack and I even took a long nap outside. It was wonderful! With Kentucky weather, it just might snow tomorrow after being in the 80's today, so we have to take advantage!!
Friday, April 24, 2009
From the beginning...
One of my main reasons for beginning this blog is to share the story and the life of my precious London. Since I have so many journal entries that I've never shared, I thought I would post some of them every now and then, so that you can get a glimpse of our story and my feelings...especially those of you who have experienced the loss of a child. So, today I thought I would take you back to the beginning - the day after London was born (Sept. 12, 2007) through Sept. 17 (the day of her funeral). In my entries, I have always been brutally honest and open. That is something that has helped me to heal. Journaling has been one way of releasing so many emotions for me...sadness, anger, disappointment - you name it. Therefore, I don't apologize for anything that may seem inappropriate. I must admit - grieving my daughter has caused me to feel ways that I never imagined I would feel; to say things I never dreamed I would say. It has been a journey that I never imagined I would be on, but here I am. I hope you get something out of my experience. This is somewhat lengthy, but it gives you an idea of how this journey of grief began.
September 12, 2007 (Wednesday)
We met with Dr. Manning again and he reiterated what London’s surgery was all about, including the risks. All of this was just words to me at that point. We already knew the risks, but the doctors had said that she was “as perfect as a baby could be” going into surgery. She was big, healthy, and breathing on her own. They expected her surgery to be a success and for her recovery to be good.
On the 12th, I got to hold her, read her Guess How Much I Love You, take pictures of her in my dress that I came home from the hospital in (Mom had ironed it and brought it). She was so adorable in that dress! She didn’t like the flash of the cameras, though…the nurses were calling it her first photo shoot! She sucked on a pacifier, snuggled with her “snoodle” (that had my scent on it), and we got to simply enjoy her. I felt her little nose against my cheek, I felt and heard her little breath in my ear, and every little grunt was like the prettiest song I’ve ever heard. I thought I would get to change her diaper, but when I went to change it, it wasn’t dirty…she was a good pooter! London didn’t cry much, but she hated having her diaper changed…she had a really strong cry then!
Jonathan sang to her…mainly made up songs that he thought of as he sang (in a baby voice of course). We took a couple of breaks to go eat and to spend time with Jagger, but Wednesday (the 12th) was all about our little girl. All of the family came and spent time with her, too. Jagger had a cold, so we didn’t want to chance bringing germs and sickness into the ICU. At the time, we knew he would have lots of time after her surgery and recovery to see her. Plus, we didn’t want him to be scared of all the monitors and IV’s. We stayed with London until about 7:00, and decided that Jagger needed some time with his Mommy and Daddy. He had been shuffled for 4 days now, and was very out of his element. We kissed London good night and left the hospital. We stayed at the Ronald McDonald house, watched football, and let Jagger play with the boatload of toys that we packed for him. Overall, we had a good night, and Jagger was glad to be with his Mommy and Daddy.
September 13, 2007 (Thursday)
We got up early, took Jagger to Mom, Dad, Clifton and Robin at their hotel, and Jonathan and I headed to the hospital. This was the big day…surgery day. My nerves were definitely bothering me that morning. My blood pressure was up for the first time in my entire pregnancy, and I felt very emotional. It was as if I had forgotten that she had a heart defect. She was so perfect in every way and was doing so well, that even though she had IV’s with different medicines, it just didn’t seem like something was really “wrong” with her. Knowing that this major surgery was coming and we couldn’t get out of it just hit me square in the face, so to speak.
I got to give her a “bath” Thursday morning. I got to rub her chest, neck and belly with a warm washcloth. I still have a visual of when the nurse lifted London’s chin so I could get her neck…it brings a smile to my face. Her little cheeks were so chubby, and she wanted to get mad, but she couldn’t cry because she couldn’t open her mouth! I cleaned under her little fat chin…she was glad when the bath was over. I couldn’t help but think that this was the last day I would see her little chest without a scar. That was okay, though. I held her forever that morning and just cuddled as much as I could – even though I had to be careful with her IV lines. She seemed perfectly content in her Mommy’s arms. Every now and then, she would snarl up her little face as if she had a bad dream, but then it would go away and she would lay there as happy as can be.
Her hair was so sweet. It was thick in the back and so very soft. As she lay in my arms, I just rubbed her head over and over. I rubbed the back of her hair by her neck and felt in in-between my fingers. She held on to my finger as if to never let go. Every now and then, I would raise the cover just to look at her precious body. Her legs were chubby, and her little feet were so sweet. I still think she had Jonathan’s feet. I didn’t notice a really long second toe! Jonathan had his time to hug and love her after I made myself break away. Plus I had to use the breast pump every 3 hours, so that took up some of my time.
We expected London’s surgery to start around 2:00, but as the day went on, we learned that it would not begin until 3:30. That was good because we had more time to spend with her. Besides leaving to eat lunch, we never left her side that day. Kyle came in while Jonathan was holding her and took video of them. Nathan Joyce, Gary Williams, Jim Moore, Michael Norton and Brian Nelson from church came that day. Nathan prayed over London with us. Brittany came, too. It was so great to see her because I didn’t expect any friends to miss work to come and see us. She wanted to be with us, and that meant so much. Brittany came back and got to see London about 30 minutes before she left for surgery.
As time ticked away, our emotions grew stronger. How could we possibly give our precious baby up to a group of “strangers” and allow her to undergo such a complex procedure? The ONLY way we could do that was because it was her ONLY chance at life. We had no choice. The nurses gave us a 30-minute warning, and then a 5-minute warning. We met with the respiratory therapist, anesthesiologist, surgeon and nurses that would be in the operating room during her surgery. They began to arrange her IV’s and all the monitors so that they could be wheeled beside her down to the 3rd floor operating room.
We got to follow London’s little incubator down the hallway, into the elevator, and onto the 3rd floor. As the elevator door opened, the nurse said, “Mom and Dad, give her kisses and you’ll see her after surgery. The operating room is right there, so you’ll need to stop here.” Tears flowed as we leaned over our precious daughter. She was still so serene and oblivious to the chaos around her. I remember kissing her head and telling her to be a strong girl, and that Mommy would see her after her surgery. I told her a million times that I loved her and that they were going to take good care of her. Jonathan said his piece and kissed her. We turned away, and they took her. She was wheeled away, and we were escorted back to the ICU to get our things. This was the hardest part of our experience thus far.
We got our things and went down to the waiting room where approximately 20 family and friends waited for us. We got a private waiting room with recliners and a TV (which we never turned on). After about an hour, the nurse came in and told us that London was very stable, that she was on the by-pass machine and that surgery had begun. This was a great beginning report. The next hour, the nurse came in and said that she was still stable, but that Dr. Manning had found something that concerned him. They had found 2 anomalous (out of place) vessels coming off of London’s pulmonary artery. In order to reconstruct her aorta, Dr. Manning had to remove them, hoping that they were not coronary arteries that supplied the heart with blood. However, they would not know if they were or not until the end of the surgery when London would begin coming off of the heart/lung bypass machine. She did say, though, that London’s heart was so pink and healthy that he truly thought that the coronaries were probably in the correct places and that these 2 vessels were insignificant. He assumed that if these 2 vessels were coronaries, then her heart would not look so healthy. Here’s where the gut punch came in…after we asked her, “What if they were the coronaries?” she said that there would be nothing else they could do.
This sickened us, but we were still trying to be encouraged. Hadn’t we done enough waiting for the past 5 months? Now, all we could do was just wait another few hours and see what the fate of our daughter was. I began to feel faint at this point. My lips turned white (so my mother-in-law said) and I just laid down, rocked and prayed. We hadn’t expected this. She was a “standard, textbook case”, remember?! How was there something that they didn’t know about? Of all the tens of ultrasounds and the echocardiograms that we had, this was something that they never found.
What seemed like an eternity was only another hour when the nurse came in and said that the surgery was almost finished, and they would begin taking London off the heart/lung bypass machine soon. She would be back in another hour to give us an update. This visit basically told us nothing new. We still had an hour to wait.
That hour finally passed, and the nurse came back with concern on her face. She said that they had slowly begun taking her off of the bypass machine, and Dr. Manning sees where blood is circulating through some of her heart, but he doesn’t see it circulating on the backside or the under-side of her heart. She said that only time would tell if it would begin circulating throughout the entire heart. They would come back when she was completely off of the bypass machine and let us know. This is the point where words on a page cannot possibly do our emotions justice. We asked her if there was a way to take a vessel out of London’s leg and create coronaries if they had to. She said that they have considered every option, but that is not an option. The nurse tried to be kind, but I knew. I just knew. I could not believe what was happening. It’s like I was standing still in eye of a tornado. Life was spiraling out of control for me. What would the next hour hold for us? Would we get miracle news and rejoice, or would we be the desperate parents who have lost a child? We still had to wait.
About 30 minutes passed, and I absolutely got sick every time I noticed a silhouette of someone passing by the frosted glass in the waiting room door. I knew that it would be the silhouette of that nurse again. What would be her look? What would she say? Well, it happened. I saw her silhouette, and for the first time since 3:30, there was someone with her. I knew. Did I say that earlier? I knew what was coming, and I couldn’t stop it. She opened the door slowly, and the other doctor squeezed in slowly behind her. She looked at us with a somber face, and slowly shook her head “no”. As I type this and speak the words softly to myself, that gut-wrenching feeling comes back to me. I was stone cold. I didn’t cry – I couldn’t cry. I stared at the floor while my husband clasped London’s silky pink “Thank Heaven for Little Girls” blanket (the one we snuggled her with) over his face and screamed bloody murder while throwing himself back and forth in the recliner…as if he was convulsing or trying to escape his own skin. Mom and Robin went over and just sat by him while he somehow gained control over his body again.
Dad, Clifton, and Nathan were in the room, too. I don’t even recall what they were doing besides kneeling by us and just being there. Again, all of this was SO unexpected! Yes, I know London’s condition was serious, but the success rate of the Norwood procedure (the 1st surgery) was 85%, and London was supposed to be a low-risk patient! How did all of that get thrown out of the window? How were we in the 15%, and how did low-risk suddenly become fatal?
I will never forget the sound that I heard from the waiting room when Mom left our private room and shared the news with our family and friends. It was like a roaring sound of screams, wails, anger, and other raw expressions of grief and sadness.
Dr. Manning and the rest of the crew came in shortly after and showed great respect. I could tell they were truly sorry for our loss, and they did everything they could to save her. Dr. Manning told us that if they had known that her coronaries were anomalous, they would not have even attempted the surgery. We would have known that our precious London was going to die and we would have just waited. I’m glad we had hope until the very end. I’m glad that we kissed her good bye with the intentions of seeing her again. I’m glad that we were able to have the surgery performed so that we can say that we did EVERYTHING possible to give her a chance at life.
Jonathan and I told the doctors and nurses how thankful we were for the care that they gave London. We told them that from the very beginning, we knew that we would do everything in our power to give London a chance. By coming to Cincinnati, we had chosen some of the best doctors, nurses and cardiology programs in the nation for her. Jonathan hugged Dr. Manning and the others while I stayed seated. The nurse who had been in contact with us (I think her name was Jen) asked us if we wanted to see London. At first, we had this pressure that we should see her and hold her again, so Jonathan said yes. Then, after thinking about it, I decided that I wanted to remember her healthy and happy – just as she was hours before when I kissed her goodbye. Those are the memories that I want to keep in my mind – not the lifeless, gray body of my precious 2-day-old daughter. Jonathan agreed, and we chose not to see her.
The chaplain came in later to talk to us about what to do next. Nathan stayed with us at this point, and our parents left the room. We had to fill out London’s death certificate, and discuss which funeral home would take care of her tiny body. This was all so surreal and torturous. The nurse came back in with a box full of memorabilia from London. She told me to go through it when I was ready. I wasn’t ready, so it remained closed.
After the chaplain left, we asked Nathan to bring everyone into our room because we wanted to talk to them. We wanted to say our piece, not get feedback, and then they could leave. One by one, they piled into the small, private waiting room. When everyone was in there, the door was shut, and I began to talk. Mind you, I still had not cried. Why? I don’t know. I think I was in utter shock from the worst blow to my emotions I could ever imagine.
I thanked them for being there for us throughout this entire journey – ever since May when we found out about London’s heart defect. I reminded them of our plan to be advocates for London and to do everything in our power to give her a chance. I explained that God shared her with us, and that it was not in his plan for her to stay. I explained that she was our miracle and she was perfect in our eyes. I simply shared my heart. Afterwards, they hugged us and they left. We gathered our things, and we left the hospital. Our journey was over. We would not be bringing our baby home after 3 or 4 weeks as we had expected. We would not have to learn how to use a feeding tube in case her sucking reflex was weak. We would not need the car seat installed beside Jagger’s. We would not need the precious pink, cotton outfits that I had packed. I had been so excited to choose which one she would come home in. Then, there were the headbands I had packed for her…one with every outfit. They were soft, lacey and had little bows on top. Of course, there were the tiny, white socks with the princess crown on the bottom. There was the rabbit that Jagger wanted his little sister to have…that was in her diaper bag. And then, there were several “Pampers Swaddler” diapers that I packed for our drive home. No, I wouldn’t need any of that. In fact, my entire image of life thereafter had been completely ripped to shreds.
We went back to the Ronald McDonald house, cleared our room and left Cincinnati – never to return, if it’s up to me. The drive home was somber…just me, Jonathan and Jagger. Jagger mentioned “baby Yundun” during the ride home. He said “Baby Yundun at the doctor, Mommy? Baby Yundun in Cincinnati?” We couldn’t even respond to this, so we simply ignored him and changed the subject. It just hurt too badly. We arrived at Mom and Dad’s house and stayed there. We weren’t ready to see “all that never was” in our own home. The reality of London’s death set in the next day and hasn’t left since.
September 14, 2007 (Friday)
It was eerie waking up and being confronted with the fact that I did not have a nightmare. My baby really did die last night. Obviously, I couldn’t sleep, so I got out of bed around 6:00. I just had an urge to write and share my feelings, so I went to Mom and Dad’s computer and composed the following email:
To all who have prayed for London...
* Please share this with any and all individuals who have lifted us up during this time. Thank you.
To all...
Four months ago, Jonathan and I were given the opportunity to abort our baby girl. We knew she had a complex heart condition, and that there were risks to giving her a chance at life. For a moment in my cowardly and overwhelmed state, I thought about this option. My thinking was that I wouldn't have to get attached, and it would save me future heartache. However, I woke up and I had a husband, Jonathan, who said that no matter what, he wanted her to know love. He wanted to hold her, smell her, kiss her, and let her know that she is loved - no matter what her time on earth was like.
From that point, we have thrived to be advocates for London - to support her and have hope that the three-staged surgeries would work, that she would have a chance at life. From the beginning, I knew that no matter what, I never wanted to have regrets. I wanted to be able to say that we did everything in our power to give London a chance. I can truly say that we have done that. She was at a top 5 hospital in the nation, with a renowned heart surgeon, doctors and nurses.
When London came into this world, it was the most peaceful, easy labor ever. They did not whisk her away. Instead, we got to hold her and family got to come in the room and admire her, just as if nothing was ever wrong. She had a strong cry, she was "perfect" in every way. The doctors and nurses continued to say that she was as perfect going into this surgery as a baby could be - that this was a "textbook, standard case". They expected her recovery to be good and for this to be a success. As surgery started, our first update was that she was very stable and things were going well.
As time progressed, however, they found a problem that none of my 10 or more echocardiograms had picked up on. Her pulmonary artery had 2 unknown vessels attached, which had to be removed for the sake of the reconstruction of her aorta. The surgeon continued with the surgery, hoping that these vessels were not coronary arteries that supplied the heart with blood. He hoped that they were simply insignificant and wouldn't play a role in her circulation. All of a sudden, this "textbook case" became a case that even this renound surgeon had never seen. In the end, London's heart was not getting the blood flow that it needed, and those vessels were in fact crucial to the success of the surgery.
Now, she's gone. Our pain is greater than anything I've ever experienced, nor want to ever experience again. My heart is truly torn. But...I will never cease to believe that London was our miracle. She was knit perfectly in my womb, just as God intended her to be. She was given to us for a reason. I would go through 100 pregnancies to experience the 2 wonderful days that I had with her. For her 2 days, she knew nothing but hugs, kisses, baby talk, and unconditional love. We got to hold her, smell her, and love her - just as Jonathan insisted from the beginning. We got to pray with her, sing her songs, and will forever be touched by her short, but unbelievable life.
London Cloe Tomes made an entire community stop and pray. She made people who never trust in God, trust in Him. She made us look beyond ourselves and have hope beyond a diagnosis. As sad as I am, I still want God to be glorified in this situation. I know that London was His from the beginning, and He shared her with us. Now, she is safe in His arms and will be until we see her again...and we will see her again. Praise God for salvation and the unbelievable hope we have in a God that loves us and promises us an eternity with Him. I couldn't possibly get through this without Him, and I know He will sustain us. We are so blessed and have a lot to be thankful for.
Thank you to every single one of you who has contributed to our situation. Thank you for praying for us, being positive, wearing "pink", and just caring. We will forever be grateful for your support. I ask that you would pray for us and our family as we face the coming days.
With love and sincere thanks,
Ashlee
** Just a side note about this email…I have been amazed at the feedback that I have gotten about it. Maybe it was God speaking through me that morning, but many have shared how blessed they were when they read it. It has been used as lessons in Sunday School in several churches, it has been the basis for church messages (at least 3 that I know of), it was read by Claudia Thurman at a breast cancer conference in which she was asked to share something about living with a purpose, and it was published in a catholic magazine. It was even sent across the nation by my previous Mary Kay National Sales Director, Pam Shaw. To say the least, God blessed me and used me through this email.
Back to Friday…
Tons of people came and brought food to Mom’s house. Brooke left work to come and visit me. We ate together and cried together. We had to go to Brown Funeral Home at 4:00 that day. We decided to go alone, just Jonathan and me. As we were about to leave Mom and Dad’s, I had to make myself open the diaper bag only to notice her picture right on top – one that the hospital had taken. After sifting through all of her precious things, I finally got to choose an outfit for her to wear home. There was one slight change in my plans, though. She was not going to our home. She was going to her Heavenly Father’s home. I suppose I should rejoice in that, but my human feelings are taking over right now, and I couldn’t rejoice in that thought if I tried. I want my baby here.
Back to choosing her outfit…my dear friend, Margie Patterson gave London this outfit. When I later told Margie that London was buried in the outfit she gave her, Margie began to cry and she said, “Well, honey, you told me you were going to bring her home in it…and she went home in it.” It was white with little pink hearts on it made out of flowers. There were 2 little white bows across the chest, and it was long-sleeved and buttoned down the front. I chose a pair of white ruffled socks with little white bows on the side. The outfit came with a little hat made out of the same material and a precious blanket, too. Tears well up in my eyes as I describe her outfit. It was so sweet, and yet my heart aches beyond measure as I go back to that moment when I had to hand that outfit over to Mr. Brown, knowing that he or someone else would be the one and only person who would dress my daughter. Her Mommy never got to dress her. Am I bitter? Yes, I’m bitter. My heart is absolutely broken into a million pieces, and I simply want my baby. I want to hear her grunt again, cry again. I want to feel her nose and her breath upon my cheek. I want to feel her tiny hand wrapped around my finger. I want to clasp her little foot in the palm of my hand again. I want to run my fingers through her silky dark hair. I want to see her in her brother’s arms, and I want to see Jagger’s face light up when he plays with her. But…I never will. Am I bitter? Yes, I’m bitter.
We decided to have a private, graveside ceremony at Gilead with Nathan preaching her funeral. There again, we simply wanted to keep our memories positive, so we chose not to have a viewing. The funeral was scheduled for Monday morning, (9/17/07), at 10:00.
This was also an extremely hard day for another reason. My milk came in. Not only was it torture to want my baby with me, even though no one could grant my request. But, it was even worse for my body to be preparing to “feed” her, yet there was no baby to feed. I only breast fed Jagger for 6 weeks, but I was fulfilled in doing so. I knew that I couldn’t actually nurse London because we had to know how much milk she was getting. However, I planned on pumping and giving her my milk in order to boost her immune system and to have that “bond” that breastfeeding tends to give a mother and baby.
My blood pressure was through the roof on Friday, too. I starting panicking and freaking out, to say the least. Cely called Alma (who was awesome, by the way), and Alma got in touch with Dr. Henderson. She called me in Xanax to calm me down, and Paxil for my anxiety. It did help once I received it. I guess it took the edge off of my unbearable emotional pain.
September 15, 2007 (Saturday)
On Saturday, I felt like I wanted to take all of our things home, put it all away and get our home back to “normal” before we went home for good. Alaena and Cely went with me (they were both wonderful through everything). We arrived to see our front porch a memorial for London. There was a concrete bench, vases of flowers, cards, candles, mums, and more things from people showing their love for us and for London. We packed everything into the entryway. I sat on the rug in the entryway and went through the box that the nurse had handed me in the hospital. There were 2 sets of footprints, clay footprints, poems, and the one that made my heart rip even more was the “wisp of hair” that they had cut and put in a little plastic bag. It was a piece of London, and I wept uncontrollably when I saw it. I needed to grieve at that moment. I needed to just sit there, stare at her things and just weep.
Cely and Alaena packed every sign or symbol of London into Cely’s car after asking me first. They took her room apart, including all her clothes, blankets,…everything. I even told them to get rid of Jagger’s “I’m a Big Brother” shirt that he wore the day she was born. Alex helped them move the furniture. All the while, I separated myself and put clothes away, washed clothes, etc. They didn’t want me to see the transition taking place. I know this kind of seems quick, but my thinking was that in the end, it was never actually London’s room. She never slept in her bed or wore the clothes in the closet. Although those are the things that add to my grief, it actually helped me to let those things go a little bit easier. I didn’t want to have to walk by her beautifully decorated nursery day after day only to be “punched in the face” every time by the fact that she will never be in it. Instead, we made it into a playroom for Jagger. Cely bought little “car” valances to go on the windows, and it is a room full of life now. Don’t get me wrong, I have sat in the floor of that room and just cried my eyes out because it’s not London’s room any more. However, changing the room from the beginning has been a good thing for us.
We kept all of London’s precious items in a beautiful flowered box. It has all the things that will be cherished by us forever: her footprints, wisp of hair, her pacifiers that she sucked on, her “snoodle”, her engraved pink Bible, her pictures, her hospital bracelet, and her dress that she wore during her hospital pictures (that was also her Mommy’s dress). All of these things are kept safely in that box, and when we feel strong enough to look at them, we can open that box and take them out. When we’re not so strong, we know that those things are tucked safely away until another time.
That night, Becky and Bill brought dinner to Mom’s house. Becky made fried chicken, mashed potatoes, biscuits and gravy, green beans, corn, cole slaw, macaroni and cheese, cheesecake and another dessert (can’t remember). It was an absolute feast and was just wonderful. They visited with us, too.
September 17, 2007 (Monday)
This was a day that I wish I could forget. That morning, we woke up only to prepare ourselves for something that no parent should ever go through – the funeral and burial of our daughter. I wore a black suit and a heart necklace in honor of London. Jonathan wore a black suit, white shirt and pink tie. He wore pink for London. Evelyn kept Jagger at Mom and Dad’s house, which was so sweet of her. I tried to prepare myself for what would take place at the church. Jonathan and I really didn’t talk during our drive. When we turned onto Gilead Church Road, I noticed a small sea of black standing and looking for us. We were the last to arrive. As we drove closer, I saw a tiny white casket on top of a green, velvet box. It had a small arrangement of miniature pink roses on it. When I saw that sight, knowing that it was my baby’s final resting place, I simply lost control of my body and my emotions. I began wailing louder than I have ever cried in my entire life. Everyone stared as Jonathan tried to help me out of our car. I couldn’t take my hands off of my face…I couldn’t possibly look at that casket again. It was the first time in my life that I was weak in the knees and had to be escorted to my seat, the one placed directly in front of my sweet baby.
As I sat down, I began fanning myself for fear that I would pass out. I told Nathan to please get started so we could get it over with. To be honest, I was so worried that I wouldn’t make it through, on top of being so emotional, that I truly do not recall all that was said. I do know that Nathan talked about how London touched more lives in her 2 days than many touch in a long lifetime. I know he titled his sermon the day before, “Does God live in London?” and he focused on how God can move and work through a baby’s life in the womb and her 2 days on earth. The message was short and sweet, which was how we wanted it. After his message, I felt in my heart the need to speak, so I slowly stood and rested my hand on London’s casket (the casket was called “Little Angel”, by the way). I shared with the small group of close family and friends (Matt and Brittany were the only friends invited to attend) how proud we were to be London’s parents, and how we know that she was our miracle. I recalled to them a quote that I received on an email that says, “Life is not measured by the breaths you take, but by the moments that take your breath away.” I said that London didn’t have very many breaths, but the moments we had with her took our breath away. That was the jest of my words.
We got into our car after receiving a few of London’s pink roses, and Jonathan decided that he wanted to help “put her in the ground”. I was shocked by this, but he said that he felt the need to do it. I didn’t question this aspect of his grief and closure, so I rode to Mom and Dad’s with them, and Jonathan stayed behind. He later mentioned that with every shovel full of dirt that he dropped onto the “little angel”, he felt a sense of release. That shows me that he needed to do that, and he followed his heart.
Everyone came to Mom and Dad’s afterwards. I guess you could say that although I was overwhelmed with grief, I had a sense of relief at this point. Now, I could just take it day-by-day, moment-by-moment, and begin this “healing” process. Well, I personally don’t think you can actually “heal” from losing your child, but I assume you can somehow learn to smile again, so I hope for that.
September 12, 2007 (Wednesday)
We met with Dr. Manning again and he reiterated what London’s surgery was all about, including the risks. All of this was just words to me at that point. We already knew the risks, but the doctors had said that she was “as perfect as a baby could be” going into surgery. She was big, healthy, and breathing on her own. They expected her surgery to be a success and for her recovery to be good.
On the 12th, I got to hold her, read her Guess How Much I Love You, take pictures of her in my dress that I came home from the hospital in (Mom had ironed it and brought it). She was so adorable in that dress! She didn’t like the flash of the cameras, though…the nurses were calling it her first photo shoot! She sucked on a pacifier, snuggled with her “snoodle” (that had my scent on it), and we got to simply enjoy her. I felt her little nose against my cheek, I felt and heard her little breath in my ear, and every little grunt was like the prettiest song I’ve ever heard. I thought I would get to change her diaper, but when I went to change it, it wasn’t dirty…she was a good pooter! London didn’t cry much, but she hated having her diaper changed…she had a really strong cry then!
Jonathan sang to her…mainly made up songs that he thought of as he sang (in a baby voice of course). We took a couple of breaks to go eat and to spend time with Jagger, but Wednesday (the 12th) was all about our little girl. All of the family came and spent time with her, too. Jagger had a cold, so we didn’t want to chance bringing germs and sickness into the ICU. At the time, we knew he would have lots of time after her surgery and recovery to see her. Plus, we didn’t want him to be scared of all the monitors and IV’s. We stayed with London until about 7:00, and decided that Jagger needed some time with his Mommy and Daddy. He had been shuffled for 4 days now, and was very out of his element. We kissed London good night and left the hospital. We stayed at the Ronald McDonald house, watched football, and let Jagger play with the boatload of toys that we packed for him. Overall, we had a good night, and Jagger was glad to be with his Mommy and Daddy.
September 13, 2007 (Thursday)
We got up early, took Jagger to Mom, Dad, Clifton and Robin at their hotel, and Jonathan and I headed to the hospital. This was the big day…surgery day. My nerves were definitely bothering me that morning. My blood pressure was up for the first time in my entire pregnancy, and I felt very emotional. It was as if I had forgotten that she had a heart defect. She was so perfect in every way and was doing so well, that even though she had IV’s with different medicines, it just didn’t seem like something was really “wrong” with her. Knowing that this major surgery was coming and we couldn’t get out of it just hit me square in the face, so to speak.
I got to give her a “bath” Thursday morning. I got to rub her chest, neck and belly with a warm washcloth. I still have a visual of when the nurse lifted London’s chin so I could get her neck…it brings a smile to my face. Her little cheeks were so chubby, and she wanted to get mad, but she couldn’t cry because she couldn’t open her mouth! I cleaned under her little fat chin…she was glad when the bath was over. I couldn’t help but think that this was the last day I would see her little chest without a scar. That was okay, though. I held her forever that morning and just cuddled as much as I could – even though I had to be careful with her IV lines. She seemed perfectly content in her Mommy’s arms. Every now and then, she would snarl up her little face as if she had a bad dream, but then it would go away and she would lay there as happy as can be.
Her hair was so sweet. It was thick in the back and so very soft. As she lay in my arms, I just rubbed her head over and over. I rubbed the back of her hair by her neck and felt in in-between my fingers. She held on to my finger as if to never let go. Every now and then, I would raise the cover just to look at her precious body. Her legs were chubby, and her little feet were so sweet. I still think she had Jonathan’s feet. I didn’t notice a really long second toe! Jonathan had his time to hug and love her after I made myself break away. Plus I had to use the breast pump every 3 hours, so that took up some of my time.
We expected London’s surgery to start around 2:00, but as the day went on, we learned that it would not begin until 3:30. That was good because we had more time to spend with her. Besides leaving to eat lunch, we never left her side that day. Kyle came in while Jonathan was holding her and took video of them. Nathan Joyce, Gary Williams, Jim Moore, Michael Norton and Brian Nelson from church came that day. Nathan prayed over London with us. Brittany came, too. It was so great to see her because I didn’t expect any friends to miss work to come and see us. She wanted to be with us, and that meant so much. Brittany came back and got to see London about 30 minutes before she left for surgery.
As time ticked away, our emotions grew stronger. How could we possibly give our precious baby up to a group of “strangers” and allow her to undergo such a complex procedure? The ONLY way we could do that was because it was her ONLY chance at life. We had no choice. The nurses gave us a 30-minute warning, and then a 5-minute warning. We met with the respiratory therapist, anesthesiologist, surgeon and nurses that would be in the operating room during her surgery. They began to arrange her IV’s and all the monitors so that they could be wheeled beside her down to the 3rd floor operating room.
We got to follow London’s little incubator down the hallway, into the elevator, and onto the 3rd floor. As the elevator door opened, the nurse said, “Mom and Dad, give her kisses and you’ll see her after surgery. The operating room is right there, so you’ll need to stop here.” Tears flowed as we leaned over our precious daughter. She was still so serene and oblivious to the chaos around her. I remember kissing her head and telling her to be a strong girl, and that Mommy would see her after her surgery. I told her a million times that I loved her and that they were going to take good care of her. Jonathan said his piece and kissed her. We turned away, and they took her. She was wheeled away, and we were escorted back to the ICU to get our things. This was the hardest part of our experience thus far.
We got our things and went down to the waiting room where approximately 20 family and friends waited for us. We got a private waiting room with recliners and a TV (which we never turned on). After about an hour, the nurse came in and told us that London was very stable, that she was on the by-pass machine and that surgery had begun. This was a great beginning report. The next hour, the nurse came in and said that she was still stable, but that Dr. Manning had found something that concerned him. They had found 2 anomalous (out of place) vessels coming off of London’s pulmonary artery. In order to reconstruct her aorta, Dr. Manning had to remove them, hoping that they were not coronary arteries that supplied the heart with blood. However, they would not know if they were or not until the end of the surgery when London would begin coming off of the heart/lung bypass machine. She did say, though, that London’s heart was so pink and healthy that he truly thought that the coronaries were probably in the correct places and that these 2 vessels were insignificant. He assumed that if these 2 vessels were coronaries, then her heart would not look so healthy. Here’s where the gut punch came in…after we asked her, “What if they were the coronaries?” she said that there would be nothing else they could do.
This sickened us, but we were still trying to be encouraged. Hadn’t we done enough waiting for the past 5 months? Now, all we could do was just wait another few hours and see what the fate of our daughter was. I began to feel faint at this point. My lips turned white (so my mother-in-law said) and I just laid down, rocked and prayed. We hadn’t expected this. She was a “standard, textbook case”, remember?! How was there something that they didn’t know about? Of all the tens of ultrasounds and the echocardiograms that we had, this was something that they never found.
What seemed like an eternity was only another hour when the nurse came in and said that the surgery was almost finished, and they would begin taking London off the heart/lung bypass machine soon. She would be back in another hour to give us an update. This visit basically told us nothing new. We still had an hour to wait.
That hour finally passed, and the nurse came back with concern on her face. She said that they had slowly begun taking her off of the bypass machine, and Dr. Manning sees where blood is circulating through some of her heart, but he doesn’t see it circulating on the backside or the under-side of her heart. She said that only time would tell if it would begin circulating throughout the entire heart. They would come back when she was completely off of the bypass machine and let us know. This is the point where words on a page cannot possibly do our emotions justice. We asked her if there was a way to take a vessel out of London’s leg and create coronaries if they had to. She said that they have considered every option, but that is not an option. The nurse tried to be kind, but I knew. I just knew. I could not believe what was happening. It’s like I was standing still in eye of a tornado. Life was spiraling out of control for me. What would the next hour hold for us? Would we get miracle news and rejoice, or would we be the desperate parents who have lost a child? We still had to wait.
About 30 minutes passed, and I absolutely got sick every time I noticed a silhouette of someone passing by the frosted glass in the waiting room door. I knew that it would be the silhouette of that nurse again. What would be her look? What would she say? Well, it happened. I saw her silhouette, and for the first time since 3:30, there was someone with her. I knew. Did I say that earlier? I knew what was coming, and I couldn’t stop it. She opened the door slowly, and the other doctor squeezed in slowly behind her. She looked at us with a somber face, and slowly shook her head “no”. As I type this and speak the words softly to myself, that gut-wrenching feeling comes back to me. I was stone cold. I didn’t cry – I couldn’t cry. I stared at the floor while my husband clasped London’s silky pink “Thank Heaven for Little Girls” blanket (the one we snuggled her with) over his face and screamed bloody murder while throwing himself back and forth in the recliner…as if he was convulsing or trying to escape his own skin. Mom and Robin went over and just sat by him while he somehow gained control over his body again.
Dad, Clifton, and Nathan were in the room, too. I don’t even recall what they were doing besides kneeling by us and just being there. Again, all of this was SO unexpected! Yes, I know London’s condition was serious, but the success rate of the Norwood procedure (the 1st surgery) was 85%, and London was supposed to be a low-risk patient! How did all of that get thrown out of the window? How were we in the 15%, and how did low-risk suddenly become fatal?
I will never forget the sound that I heard from the waiting room when Mom left our private room and shared the news with our family and friends. It was like a roaring sound of screams, wails, anger, and other raw expressions of grief and sadness.
Dr. Manning and the rest of the crew came in shortly after and showed great respect. I could tell they were truly sorry for our loss, and they did everything they could to save her. Dr. Manning told us that if they had known that her coronaries were anomalous, they would not have even attempted the surgery. We would have known that our precious London was going to die and we would have just waited. I’m glad we had hope until the very end. I’m glad that we kissed her good bye with the intentions of seeing her again. I’m glad that we were able to have the surgery performed so that we can say that we did EVERYTHING possible to give her a chance at life.
Jonathan and I told the doctors and nurses how thankful we were for the care that they gave London. We told them that from the very beginning, we knew that we would do everything in our power to give London a chance. By coming to Cincinnati, we had chosen some of the best doctors, nurses and cardiology programs in the nation for her. Jonathan hugged Dr. Manning and the others while I stayed seated. The nurse who had been in contact with us (I think her name was Jen) asked us if we wanted to see London. At first, we had this pressure that we should see her and hold her again, so Jonathan said yes. Then, after thinking about it, I decided that I wanted to remember her healthy and happy – just as she was hours before when I kissed her goodbye. Those are the memories that I want to keep in my mind – not the lifeless, gray body of my precious 2-day-old daughter. Jonathan agreed, and we chose not to see her.
The chaplain came in later to talk to us about what to do next. Nathan stayed with us at this point, and our parents left the room. We had to fill out London’s death certificate, and discuss which funeral home would take care of her tiny body. This was all so surreal and torturous. The nurse came back in with a box full of memorabilia from London. She told me to go through it when I was ready. I wasn’t ready, so it remained closed.
After the chaplain left, we asked Nathan to bring everyone into our room because we wanted to talk to them. We wanted to say our piece, not get feedback, and then they could leave. One by one, they piled into the small, private waiting room. When everyone was in there, the door was shut, and I began to talk. Mind you, I still had not cried. Why? I don’t know. I think I was in utter shock from the worst blow to my emotions I could ever imagine.
I thanked them for being there for us throughout this entire journey – ever since May when we found out about London’s heart defect. I reminded them of our plan to be advocates for London and to do everything in our power to give her a chance. I explained that God shared her with us, and that it was not in his plan for her to stay. I explained that she was our miracle and she was perfect in our eyes. I simply shared my heart. Afterwards, they hugged us and they left. We gathered our things, and we left the hospital. Our journey was over. We would not be bringing our baby home after 3 or 4 weeks as we had expected. We would not have to learn how to use a feeding tube in case her sucking reflex was weak. We would not need the car seat installed beside Jagger’s. We would not need the precious pink, cotton outfits that I had packed. I had been so excited to choose which one she would come home in. Then, there were the headbands I had packed for her…one with every outfit. They were soft, lacey and had little bows on top. Of course, there were the tiny, white socks with the princess crown on the bottom. There was the rabbit that Jagger wanted his little sister to have…that was in her diaper bag. And then, there were several “Pampers Swaddler” diapers that I packed for our drive home. No, I wouldn’t need any of that. In fact, my entire image of life thereafter had been completely ripped to shreds.
We went back to the Ronald McDonald house, cleared our room and left Cincinnati – never to return, if it’s up to me. The drive home was somber…just me, Jonathan and Jagger. Jagger mentioned “baby Yundun” during the ride home. He said “Baby Yundun at the doctor, Mommy? Baby Yundun in Cincinnati?” We couldn’t even respond to this, so we simply ignored him and changed the subject. It just hurt too badly. We arrived at Mom and Dad’s house and stayed there. We weren’t ready to see “all that never was” in our own home. The reality of London’s death set in the next day and hasn’t left since.
September 14, 2007 (Friday)
It was eerie waking up and being confronted with the fact that I did not have a nightmare. My baby really did die last night. Obviously, I couldn’t sleep, so I got out of bed around 6:00. I just had an urge to write and share my feelings, so I went to Mom and Dad’s computer and composed the following email:
To all who have prayed for London...
* Please share this with any and all individuals who have lifted us up during this time. Thank you.
To all...
Four months ago, Jonathan and I were given the opportunity to abort our baby girl. We knew she had a complex heart condition, and that there were risks to giving her a chance at life. For a moment in my cowardly and overwhelmed state, I thought about this option. My thinking was that I wouldn't have to get attached, and it would save me future heartache. However, I woke up and I had a husband, Jonathan, who said that no matter what, he wanted her to know love. He wanted to hold her, smell her, kiss her, and let her know that she is loved - no matter what her time on earth was like.
From that point, we have thrived to be advocates for London - to support her and have hope that the three-staged surgeries would work, that she would have a chance at life. From the beginning, I knew that no matter what, I never wanted to have regrets. I wanted to be able to say that we did everything in our power to give London a chance. I can truly say that we have done that. She was at a top 5 hospital in the nation, with a renowned heart surgeon, doctors and nurses.
When London came into this world, it was the most peaceful, easy labor ever. They did not whisk her away. Instead, we got to hold her and family got to come in the room and admire her, just as if nothing was ever wrong. She had a strong cry, she was "perfect" in every way. The doctors and nurses continued to say that she was as perfect going into this surgery as a baby could be - that this was a "textbook, standard case". They expected her recovery to be good and for this to be a success. As surgery started, our first update was that she was very stable and things were going well.
As time progressed, however, they found a problem that none of my 10 or more echocardiograms had picked up on. Her pulmonary artery had 2 unknown vessels attached, which had to be removed for the sake of the reconstruction of her aorta. The surgeon continued with the surgery, hoping that these vessels were not coronary arteries that supplied the heart with blood. He hoped that they were simply insignificant and wouldn't play a role in her circulation. All of a sudden, this "textbook case" became a case that even this renound surgeon had never seen. In the end, London's heart was not getting the blood flow that it needed, and those vessels were in fact crucial to the success of the surgery.
Now, she's gone. Our pain is greater than anything I've ever experienced, nor want to ever experience again. My heart is truly torn. But...I will never cease to believe that London was our miracle. She was knit perfectly in my womb, just as God intended her to be. She was given to us for a reason. I would go through 100 pregnancies to experience the 2 wonderful days that I had with her. For her 2 days, she knew nothing but hugs, kisses, baby talk, and unconditional love. We got to hold her, smell her, and love her - just as Jonathan insisted from the beginning. We got to pray with her, sing her songs, and will forever be touched by her short, but unbelievable life.
London Cloe Tomes made an entire community stop and pray. She made people who never trust in God, trust in Him. She made us look beyond ourselves and have hope beyond a diagnosis. As sad as I am, I still want God to be glorified in this situation. I know that London was His from the beginning, and He shared her with us. Now, she is safe in His arms and will be until we see her again...and we will see her again. Praise God for salvation and the unbelievable hope we have in a God that loves us and promises us an eternity with Him. I couldn't possibly get through this without Him, and I know He will sustain us. We are so blessed and have a lot to be thankful for.
Thank you to every single one of you who has contributed to our situation. Thank you for praying for us, being positive, wearing "pink", and just caring. We will forever be grateful for your support. I ask that you would pray for us and our family as we face the coming days.
With love and sincere thanks,
Ashlee
** Just a side note about this email…I have been amazed at the feedback that I have gotten about it. Maybe it was God speaking through me that morning, but many have shared how blessed they were when they read it. It has been used as lessons in Sunday School in several churches, it has been the basis for church messages (at least 3 that I know of), it was read by Claudia Thurman at a breast cancer conference in which she was asked to share something about living with a purpose, and it was published in a catholic magazine. It was even sent across the nation by my previous Mary Kay National Sales Director, Pam Shaw. To say the least, God blessed me and used me through this email.
Back to Friday…
Tons of people came and brought food to Mom’s house. Brooke left work to come and visit me. We ate together and cried together. We had to go to Brown Funeral Home at 4:00 that day. We decided to go alone, just Jonathan and me. As we were about to leave Mom and Dad’s, I had to make myself open the diaper bag only to notice her picture right on top – one that the hospital had taken. After sifting through all of her precious things, I finally got to choose an outfit for her to wear home. There was one slight change in my plans, though. She was not going to our home. She was going to her Heavenly Father’s home. I suppose I should rejoice in that, but my human feelings are taking over right now, and I couldn’t rejoice in that thought if I tried. I want my baby here.
Back to choosing her outfit…my dear friend, Margie Patterson gave London this outfit. When I later told Margie that London was buried in the outfit she gave her, Margie began to cry and she said, “Well, honey, you told me you were going to bring her home in it…and she went home in it.” It was white with little pink hearts on it made out of flowers. There were 2 little white bows across the chest, and it was long-sleeved and buttoned down the front. I chose a pair of white ruffled socks with little white bows on the side. The outfit came with a little hat made out of the same material and a precious blanket, too. Tears well up in my eyes as I describe her outfit. It was so sweet, and yet my heart aches beyond measure as I go back to that moment when I had to hand that outfit over to Mr. Brown, knowing that he or someone else would be the one and only person who would dress my daughter. Her Mommy never got to dress her. Am I bitter? Yes, I’m bitter. My heart is absolutely broken into a million pieces, and I simply want my baby. I want to hear her grunt again, cry again. I want to feel her nose and her breath upon my cheek. I want to feel her tiny hand wrapped around my finger. I want to clasp her little foot in the palm of my hand again. I want to run my fingers through her silky dark hair. I want to see her in her brother’s arms, and I want to see Jagger’s face light up when he plays with her. But…I never will. Am I bitter? Yes, I’m bitter.
We decided to have a private, graveside ceremony at Gilead with Nathan preaching her funeral. There again, we simply wanted to keep our memories positive, so we chose not to have a viewing. The funeral was scheduled for Monday morning, (9/17/07), at 10:00.
This was also an extremely hard day for another reason. My milk came in. Not only was it torture to want my baby with me, even though no one could grant my request. But, it was even worse for my body to be preparing to “feed” her, yet there was no baby to feed. I only breast fed Jagger for 6 weeks, but I was fulfilled in doing so. I knew that I couldn’t actually nurse London because we had to know how much milk she was getting. However, I planned on pumping and giving her my milk in order to boost her immune system and to have that “bond” that breastfeeding tends to give a mother and baby.
My blood pressure was through the roof on Friday, too. I starting panicking and freaking out, to say the least. Cely called Alma (who was awesome, by the way), and Alma got in touch with Dr. Henderson. She called me in Xanax to calm me down, and Paxil for my anxiety. It did help once I received it. I guess it took the edge off of my unbearable emotional pain.
September 15, 2007 (Saturday)
On Saturday, I felt like I wanted to take all of our things home, put it all away and get our home back to “normal” before we went home for good. Alaena and Cely went with me (they were both wonderful through everything). We arrived to see our front porch a memorial for London. There was a concrete bench, vases of flowers, cards, candles, mums, and more things from people showing their love for us and for London. We packed everything into the entryway. I sat on the rug in the entryway and went through the box that the nurse had handed me in the hospital. There were 2 sets of footprints, clay footprints, poems, and the one that made my heart rip even more was the “wisp of hair” that they had cut and put in a little plastic bag. It was a piece of London, and I wept uncontrollably when I saw it. I needed to grieve at that moment. I needed to just sit there, stare at her things and just weep.
Cely and Alaena packed every sign or symbol of London into Cely’s car after asking me first. They took her room apart, including all her clothes, blankets,…everything. I even told them to get rid of Jagger’s “I’m a Big Brother” shirt that he wore the day she was born. Alex helped them move the furniture. All the while, I separated myself and put clothes away, washed clothes, etc. They didn’t want me to see the transition taking place. I know this kind of seems quick, but my thinking was that in the end, it was never actually London’s room. She never slept in her bed or wore the clothes in the closet. Although those are the things that add to my grief, it actually helped me to let those things go a little bit easier. I didn’t want to have to walk by her beautifully decorated nursery day after day only to be “punched in the face” every time by the fact that she will never be in it. Instead, we made it into a playroom for Jagger. Cely bought little “car” valances to go on the windows, and it is a room full of life now. Don’t get me wrong, I have sat in the floor of that room and just cried my eyes out because it’s not London’s room any more. However, changing the room from the beginning has been a good thing for us.
We kept all of London’s precious items in a beautiful flowered box. It has all the things that will be cherished by us forever: her footprints, wisp of hair, her pacifiers that she sucked on, her “snoodle”, her engraved pink Bible, her pictures, her hospital bracelet, and her dress that she wore during her hospital pictures (that was also her Mommy’s dress). All of these things are kept safely in that box, and when we feel strong enough to look at them, we can open that box and take them out. When we’re not so strong, we know that those things are tucked safely away until another time.
That night, Becky and Bill brought dinner to Mom’s house. Becky made fried chicken, mashed potatoes, biscuits and gravy, green beans, corn, cole slaw, macaroni and cheese, cheesecake and another dessert (can’t remember). It was an absolute feast and was just wonderful. They visited with us, too.
September 17, 2007 (Monday)
This was a day that I wish I could forget. That morning, we woke up only to prepare ourselves for something that no parent should ever go through – the funeral and burial of our daughter. I wore a black suit and a heart necklace in honor of London. Jonathan wore a black suit, white shirt and pink tie. He wore pink for London. Evelyn kept Jagger at Mom and Dad’s house, which was so sweet of her. I tried to prepare myself for what would take place at the church. Jonathan and I really didn’t talk during our drive. When we turned onto Gilead Church Road, I noticed a small sea of black standing and looking for us. We were the last to arrive. As we drove closer, I saw a tiny white casket on top of a green, velvet box. It had a small arrangement of miniature pink roses on it. When I saw that sight, knowing that it was my baby’s final resting place, I simply lost control of my body and my emotions. I began wailing louder than I have ever cried in my entire life. Everyone stared as Jonathan tried to help me out of our car. I couldn’t take my hands off of my face…I couldn’t possibly look at that casket again. It was the first time in my life that I was weak in the knees and had to be escorted to my seat, the one placed directly in front of my sweet baby.
As I sat down, I began fanning myself for fear that I would pass out. I told Nathan to please get started so we could get it over with. To be honest, I was so worried that I wouldn’t make it through, on top of being so emotional, that I truly do not recall all that was said. I do know that Nathan talked about how London touched more lives in her 2 days than many touch in a long lifetime. I know he titled his sermon the day before, “Does God live in London?” and he focused on how God can move and work through a baby’s life in the womb and her 2 days on earth. The message was short and sweet, which was how we wanted it. After his message, I felt in my heart the need to speak, so I slowly stood and rested my hand on London’s casket (the casket was called “Little Angel”, by the way). I shared with the small group of close family and friends (Matt and Brittany were the only friends invited to attend) how proud we were to be London’s parents, and how we know that she was our miracle. I recalled to them a quote that I received on an email that says, “Life is not measured by the breaths you take, but by the moments that take your breath away.” I said that London didn’t have very many breaths, but the moments we had with her took our breath away. That was the jest of my words.
We got into our car after receiving a few of London’s pink roses, and Jonathan decided that he wanted to help “put her in the ground”. I was shocked by this, but he said that he felt the need to do it. I didn’t question this aspect of his grief and closure, so I rode to Mom and Dad’s with them, and Jonathan stayed behind. He later mentioned that with every shovel full of dirt that he dropped onto the “little angel”, he felt a sense of release. That shows me that he needed to do that, and he followed his heart.
Everyone came to Mom and Dad’s afterwards. I guess you could say that although I was overwhelmed with grief, I had a sense of relief at this point. Now, I could just take it day-by-day, moment-by-moment, and begin this “healing” process. Well, I personally don’t think you can actually “heal” from losing your child, but I assume you can somehow learn to smile again, so I hope for that.
Thursday, April 23, 2009
Out of nowhere
Last night we were getting ready for bed...Jack was lying on my chest in the bed, Jagger was putting on his pj's and Jonathan was helping him. Jagger looked at Jonathan's new tattoo of Jack's footprints on his arm, and he said, "Daddy, I love Jack's paw prints on your arm." It was so cute to hear him say "paw prints". Anyway, then he wanted to look at his own "paw prints" on Daddy's arm. Then, the subject changed. It struck me that Jagger didn't ask to see London's "paw prints" on Daddy's arm. I kind of ignored it, but it began to make me sad. Her precious little footprints are stamped permanently on Daddy's arm, too, but does anyone notice? For that moment, it was as if she never existed. I began to have one of those grief moments, and I began to cry. Plus, Jack has really been smiling and cooing a lot. It just melts my heart. So, in the midst of my tears, I welcomed every depressing thought that came my way. It's like I wanted to grieve. So, I began to think about how I never saw London's first smile. I never heard her coo or her giggles. As I held Jack in my arms, feeling his soft skin, rubbing his little head, I just grieved my London. I remember how her skin felt and how I would rub her little head. Now, all I have is a "wisp" of her hair in a little plastic zip-lock bag, tucked away in her little box with all the other things that remind me of her. Should I even go on? It's depressing, I know. I needed to grieve. So, out of nowhere, I had a river of tears last night. That happens sometimes.
Wednesday, April 22, 2009
My first post
This is my first post ever to my new blog! I've been a follower of blogs for a while now, but never took the time to create my own. I'm excited to share my life, my feelings, experiences, and pictures (of course) to family, friends and anyone else who's interested! I should have begun this process 2 years ago when we found out that our precious little girl had a heart defect. I have over 50 pages of a journal that I've kept in Word, explaining my grief and healing. I will not attempt to post all of my journal entries, but I promise to share my feelings from this point on. Grief does not have as tight a hold of me as it used to, but I still have moments where all I can think of is my London. Sometimes those moments are accompanied with tears, sometimes with a smile - depending on the day. We are blessed, though, to have our precious boys, and Jack (2 months old today) has brought so much happiness back into our lives after losing London. It's wonderful having a baby in our home to love. It's awesome seeing Jagger as a big brother - finally. Jack doesn't take London's place...nothing ever will...but he does give us a new reason to smile! We are blessed!
Subscribe to:
Posts (Atom)
+of+Ashlee%27s+camera+109.jpg)
