When it hit me (more Journal entries)

Nearly 3 months after London died, I began noticing that my grief was changing. It's as if the shock was wearing off, and I began feeling for the first time. It was so rough, to say the least. These journal entries reflect that time period. Again, I haven't modified them, so sorry if some of it is insignificant or boring! It's just my account of day-to-day feelings and struggles, laughter and tears, that I experienced back then.


December 3, 2007 (Monday)
It’s been a while since I’ve written. The past couple of weeks have been very hard for me. I feel that I’m sinking into a depression. I now can officially say that I know what it feels like to be depressed. Yes, I’ve taken Paxil before and take it now, but it’s for my anxiety and worry. Never have I had a loss of interest in things or wanted to just remain in a dark room and cry. That’s how I’ve felt a lot lately.

Last Sunday, November 25, I went to get Jagger out of the church nursery, and every baby girl in the church was there. One of them was crying and her grandma was consoling her. That baby girl was born about 2 weeks before London. Then, another baby who was 1 week older than London was resting in the swing with her precious little red velvet dress and head band on. Another was gazing at everyone and everything from the arms of the nursery worker. It’s as if I was just kicked in the gut once again. So that’s about the size that London would have been. What would her cry sound like? What precious outfit would I dress her in for church? As I walked out of the nursery with Jagger, fighting back the tears, I made my way to the car. As we passed London’s grave, I glared at it for a moment, but kept walking because I didn’t want Jagger to notice my grief.

I’ve found that shopping during Christmas time is just not for me – definitely not this year. I absolutely love Christmas music, but it’s like a dagger in my heart right now. One of my favorites is “Have Yourself a Merry Little Christmas”. I’ve always loved that song, but it just makes me so sad now. I want London here so badly that it truly just aches. Every store that I go into, I notice a “Baby’s first Christmas” ornament, bib, outfit, etc. It’s as if they’re on display just for me. Also, all I can see is baby girls swaddled in their plush, pink blankets. Is everyone having baby girls, or what? That’s what it seems like.

Brooke came to Mom’s house last Thursday night for dinner and for us to see Will. To see Jagger with Will was just so sweet, yet so upsetting at the same time. Jagger was so intrigued by Will. He commented on everything that he did; he laughed at his funny noises and faces; he told me to look at that baby over and over with a smile on his face. Jagger had a sippy cup with a baseball on it, and he said, “Look at my baseball, Will. Do you like my baseball?” It was as if he expected the baby to talk back to him. He truly wanted Will’s attention and wanted to impress him. All I could think about was how sweet and involved he would have been with London. He would have wanted to show her all his toys. He would have loved all of her faces and sounds. He never even met her. Sometimes I feel guilty about that. I’ve mentioned that before, but what’s done is done. Anyway, my point is that Jagger would love being a big brother, and I’m so sad that he’s not one.

My fears of having another child are very great right now. I cannot imagine enduring this torture again. Last week, I decided to email London’s cardiologist and surgeon to see what their knowledge was on my chances of having another child with a heart defect. Here is what Dr. Gottliebson and Dr. Manning had to say:

Ashlee,

I completely understand the concerns you raise. I will say up front that I am not a genetic specialist, so I don't have the exact percentages of chances/risks for having another child with a similar heart defect. Our Genetics team would be an excellent resource to tap for more specific information. Here is the link for more info:

http://www.cincinnatichildrens.org/svc/alpha/h/genetics/default.htm

HLHS is one of the more common heart defects we see, but the overall chance of having a child with any kind of heart defect (most complex to most simple) runs slightly less than 1%. I believe the data the genetics folks quote is that with a history of a child with a heart defect, the chance of having another with a heart defect roughly doubles, so at about 2% chance it's still pretty low. While we are trying all the time to learn about the genetics of heart defects, we do not have many genetic marker tests that can be done to screen in pregnancy or to screen parents.

I hope this info helps. Please let me know if I can help further.

Peter Manning



Hello Mrs. Tomes

Sorry I couldn't reply yesterday. I asked Cheri Franklin, our Fetal Nurse Practitioner, to contact you yesterday o let you know I did get your message, though I am not sure whether she has been able to contact you yet.

Let me first express my deepest sympathies to you, your husband, your son and your extended family for your loss. I knew of London's situation only after her death, and apologize for not having expressed my condolences sooner. I very much hope your healing will be manageable and progressive.

I re-reviewed London's prenatal studies as well as her newborn echo study, and also reviewed her hospital chart. From a prenatal perspective, her anatomy indeed appeared fairly straightforward for Hypoplastic Left Heart Syndrome. Unfortunately, the additional left coronary artery anomaly she had is not only not detectable prenatally, but was not apparent on her newborn echo (several of us have independently re-reviewed the studies), similar to that reported in the very few (2-3) case reports in the literature.

My answer to your question is that London's heart anatomy was indeed extremely rare, not because of the hypoplastic left heart (our center probably sees 20 cases/year), comparable to the numbers seen at many other moderate sized congenital heart programs. The additional finding of a coronary artery anomaly is what made London's condition so rare. I only found 1 case report yesterday for anomalous left coronary artery discovered in the operating room, and despite it being recognized there and heroic measures being used, that baby did not survive. Another report of an anomalous right coronary artery was also not diagnosed until being in the operating room. The other few reports are from pathologic series, after autopsies on other babies who died.

As for chances of recurrence, one of my colleagues here has specifically looked at children with all forms of "left sided obstructive lesions" (of which HLHS is the most severe). Clearly, there is an increased risk, and putting numbers to it is based only on small studies. I just spoke with him about your question - his response - ~ 5% risk of HLHS in another baby for you and your husband; ~15-20% risk of any congenital heart disease (most likely to be something a bicuspid aortic valve, which is often a mild lesion not requiring any intervention at all).

My recommendations to you regarding a future pregnancy are (1) consider discussions with one of our genetic counselors here at CCHMC ; and (2) have us here at CCHMC perform an early fetal echocardiogram (14-16 weeks) if you would consider termination of the pregnancy were we to find a significant heart lesion.

I hope this information is helpful. Please do not hesitate to let me know if I can provide any additional information to you.

Best regards,
Bill Gottliebson

Dr. G’s information was a little more troubling than Dr. Manning’s. I know the chances are slim, but so were the chances of London not surviving the surgery…and so were the chances of London having a rare complication with her anomalous coronary arteries. I don’t trust slim chances any more. Not to be a pessimist, but I’ve been the super tiny percentage before. I’ve been the rare case before, and who’s to say that won’t be me again? Maybe I should be more positive than that. Or maybe I’ve been burned so badly that I don’t want to take any chances. Who knows what our family’s future holds? Maybe I’ll give birth to one or two more healthy babies. Maybe we’ll adopt a little girl who needs a loving family. I don’t know what our family will consist of, but I know that I don’t feel finished. Jagger is the light of my life, and I thank God for him every day. However, I feel the need for more children. I want another baby so badly.

On Friday, November 30, I took Jagger to get his Flu Shot booster. He cried, but was tough overall. I promised him a toy if he was a big boy, so we went to Big Lots afterwards. He got so grumpy and was crying for every toy in the store! It was stressful. Mom, Afton and Alaena met me there and tried to entertain him, but he was a pill! I got him a toy, but it didn’t help his crying. Then, I went through McDonald’s drive thru, and he cried the whole time. He wouldn’t eat his chicken nuggets, and didn’t even care about his toy. We drove to Mom and Dad’s because they wanted him to stay the night with them. Dad was able to calm him down, of course. I was stressed, but emotional also. I just couldn’t take it, I guess, so I began to cry. I left mom and dad’s and went home. Jonathan met me in the entryway, and I just broke down on his chest…sobbing, moaning, and saying, “I want my baby. I just want my baby.” It’s like I didn’t care who was listening. All of my guards were down, and I was just free to mourn and grieve on my husband’s shoulder. Jonathan asked what had caused this, and I just began to vent about all the things that make me grieve over London…many things that I’ve mentioned in this entry. I wanted to just lie in bed in a dark room and cry. However, Cely called and invited us to go out and eat with them. I called her and told her I just wasn’t in the mood. Then, after some convincing from Jonathan, I decided it would probably be good for me to get out of the house, so we went. We met them at their house and went to Stone Hearth. It was great, and I’m glad that we went.

We went to Mom and Dad’s Saturday morning to get Jagger. Santa was in Glendale that morning, so we wanted to take him down there. I started getting sad right before we left – just thinking how I wish London could see Santa for the first time. Anyway, I thought I could handle it. After all, Jagger is big enough to either like Santa and stay in his lap or get scared to death and freak out! I was eager to see what his reaction to Santa would be. We got to Glendale, and I had my sunglasses on so no one could see my red, swollen eyes. Dad took Jagger into the “Sisters” shop (across from the Whistle Stop), and they found Santa! As I walked up the stairs and opened the shop door, I saw one of our student’s moms holding her newborn baby girl in her arms…swaddling her in a satin pink blanket. I immediately turned around, walked quickly around the building with my head cast downward and lost control of my emotions once again.

I shouldn’t care, but that woman has 5 kids…keeps having them, and can’t afford any of them. I’m not saying she’s not a good mom, but it’s not fair! It’s so not fair! Jonathan followed me and said that we would go back to mom and dad’s. I felt terrible, but I couldn’t handle it. I couldn’t even see my son sit in Santa’s lap because of my grief. He did sit in Santa’s lap and told him that he wanted toys for Christmas. I wish I had seen that. I am seeing how my grief is controlling so much of my life. It sucks! I try to be strong…I really do, but it’s totally catching up with me.

Clifton and Robin came and got Jagger on Saturday. They took him to Bowling Green for the night. He was excited. Clifton called and wanted to tell us something hilarious that Jagger had said. Clifton stood in a chair to get a book on the top shelf. When Jagger saw him standing up in the chair, he said just as plain as day, “Poppy, you know better than that. You could fall and hurt yourself.” Who knows where he heard that, but it was so funny to think of him being so bossy!

While Jagger was in Bowling Green, I went to E-Town and got my hair highlighted and cut. Afton went with me. We went shopping afterwards, and Mom met us. I attempted to be in a good mood, but I just couldn’t do it. I simply existed – just showed up, basically. Dad called and wanted to meet us at Rafferty’s for dinner, but I opted to go home instead.

I went to Walgreen’s on the way home and spent about an hour printing pictures of London and Jagger. I finally printed all of her precious pictures. I also made our Christmas cards. It has one big picture of Jagger (black and white). He’s got his finger in his mouth and is standing up in the bathtub. He’s filthy from playing in the dirt outside. It’s cute. Then, next to that picture is one of London in her pink dress and little hair bow. The card says “Peace on Earth”, and then I wrote, “In memory of our precious London Cloe. Love, Jonathan, Ashlee and Jagger” I didn’t want our cards to be sad or depressing, but I just felt the need to honor London this Christmas. I would have had a precious picture of her and Jagger if she were here, so I wanted to get as close to that as possible. Plus, no one has seen the pictures of her in her pink dress, so this was my chance to share that. The poor girl at the photo lab in Walgreen’s probably was a nervous wreck because I sat there and cried the whole time that I printed pictures. Oh well…

Also this weekend, Alma Lark called me to check on me. She’s so sweet and thoughtful. She gave me the number to a counselor, Bonnie French. I called to make an appointment, but I haven’t heard back from her (I had to leave a message). I’m not too proud to recognize that I need extra help right now. I need to talk about my feelings, my disappointment, my anger…everything. I definitely do not want to get sucked in too far to this depression thing. I can’t allow myself to do that for Jagger and Jonathan’s sake.

Today, I brought a few pictures of London to school. I displayed them on my desk. Have I mentioned that my heart aches for her? Pictures are the only things that keep her alive in my heart. Yes, I can imagine her and think about her, but pictures allow me to just hold on to that precious, perfect body that I loved so very much.

Life is so hard right now.

December 17, 2007 (Monday)
It’s been a while since I’ve written. Since I last wrote, I have seen a slight improvement in my mood and my attitude. To begin, last Sunday, December 9, I had a very hard day, and actually had to leave church because I was so emotional. Some of it was due to the preacher’s message that we should look forward to what God has in store for us. Another reason I was upset was I kept hearing a newborn baby fussing, having the hiccups, etc. on the other side of church. I’m scared! I want so badly to look forward to what God has in store for my family and me, but I’m very insecure in that right now. I fear hurt; I fear loss and disappointment. As I walked outside, I made my way to London’s tiny grave and just bawled as I stared at her little grave marker – the one with her precious name written on it. As I mourned alone, I noticed someone walking towards me, and it was Jonathan. He just hugged me and let me weep. I just wanted to drive, so that’s what we did. We got Jagger at Mom and Dad’s after church and by then, I had gathered myself a little and felt better. The rest of the day was okay, I guess.

On Tuesday, Dec. 11, I went to see Bonnie French for the first time at 10:00. When I arrived, I immediately felt comfortable and safe in her office. There was calming music playing, it was cozy, and there were baked goodies and spiced tea to drink. It was very clean, organized, and there were inspirational/spiritual verses all over the place. I knew from that moment that God had placed me there at that moment for a reason. A massage therapist, Brenda, gave me a chair massage before I met with Bonnie, and it was wonderful.

My meeting with Bonnie was very enlightening, and I think she’s really going to help me through my grief and other issues that I face on a daily basis. After about 2 hours of talking about my feelings, family history, fears, hopes, etc., Bonnie gave me her insight on where she feels I am at with my grief. She mentioned that she thinks I am having very normal feelings and that my reactions are expected. She also mentioned that she thinks prior to London’s death, that I was in denial that death was possible. Of course, I knew it was a possibility, but I was in denial that it was actually going to happen. I personally never thought that I was in denial, but once I started analyzing what Bonnie had said, I have to say that I agree. It’s like I was a zealot in trying to be in control as much as I could of London’s fate. I swam 100 laps every day, I ate well, I didn’t drink caffeine, I shared my testimony with others, and we had thousands of people praying for her and for us. I prayed diligently daily for London. In a sense, it’s like I had a deep down feeling that all of that would insure that London was going to be okay. I never actually looked at it that way, but I guess it’s true.

Bonnie told me to get a book called Life after Loss by Bob Deits. I have since gotten it, and it’s wonderful. It’s a basic book about grief, and although I’m not a “reader”, I love it and actually look forward to reading it. It makes me feel good and normal. Bonnie also told me that we would be really facing my grief head on in order to move on. I will, at some point, actually write a letter to London. When she told me this, I began to cry because it seemed so difficult to even imagine. She said that I would tell London what I thought about her, where I was emotionally when she died, and where I am now, emotionally. I will basically talk to her in a letter. Bonnie told me that it would be very difficult, but that it would be freeing and emotionally cleansing. I’m willing to do whatever it takes to work through my grief and find happiness and fulfillment again. I go back to Bonnie this Thursday, and I’m looking forward to it.

After my appointment with Bonnie, I thought I would get some Christmas shopping done, so I headed for none other than Wal-Mart! Anyway, I got there and got a phone call from the daycare telling me that Jagger had a 102 degree fever. So, shopping had to wait. I rushed to Upton, got Jagger, and we rushed back to the doctor. He had a terrible ear infection and had to have an antibiotic shot in his leg. I stayed home with him the next day and we had to go back to the doctor so they could check his ear. Unfortunately, he had to have another antibiotic shot in the other leg! It was so sad. I stayed one more day with him, and we had to go back to the doctor a third time so they could check his ear again. Thank goodness he didn’t have to have another shot, but he was put on a 10-day antibiotic. He seems to be feeling much better now.

Friday, we went to Louisville (Mom, Cely, Grandmother, Mary, Jessie, Afton, Alaena, and me) for Cely’s birthday. We shopped for a while and then ate at PF Chang’s. We had a great time, and we laughed a lot. I enjoyed myself. On Saturday, dad kept Jagger, and we did some Christmas shopping. I’m almost done, thank goodness! On Saturday night, we went to the Christmas Cantata at church. It was great, and I didn’t even get emotional except during one song. Yesterday at church, I really felt good. Don’t get me wrong, there are things that still bother me…like parking next to London’s grave or seeing all the baby girls in the nursery. However, I felt stronger yesterday. I wasn’t as emotional, and I truly felt more energized.

One thing that bothered me was when a friend at church told me that her sister was pregnant with a little girl, and how they were so excited. Her sister had a boy about a month after Jagger was born. Anyway, I acted happy for them, and I’m not saying that I’m not happy for them, but it was hard to smile when I don’t have my baby girl. There’s this attitude, I guess, that having a boy and a girl is just the ideal family…you get one of each and get to enjoy all the aspects of both sexes. I am bitter sometimes that I had that, but it was taken away from me. Of course, I absolutely adore everything about my wild little boy. It’s so funny that his Christmas list consists of tractors, diggers, dump truck, trains, combine, etc. He’s such a boy! However, I just grieve the fact that I don’t get to buy pink princess things or hair bows or baby dolls this Christmas. I am sad that I am missing out on having a daughter…I wish so badly that I could see her chubby legs crammed in a pair of stockings! I wish so badly that I could paint her little toenails only to see and hear Alaena’s reaction or to hear her daddy’s response! I just wish she were here for us to kiss on and snuggle with, to give her baths and see her arms and legs flailing with excitement. I want to know what her little coos would sound like or what her smile would have looked like. I never got to see her smile, but my heart only hopes that she felt happy in my arms. I hope that she knew I was her mommy, and I hope she could feel comfort in the way that I talked to her and kissed on her as I stroked her perfectly shaped head and soft dark hair over and over.

I can say that I feel better than I did a few weeks ago. I know that there is no medicine for grief…I just have to wait it out. However, I pray that whenever I get down that I would remind myself of three things that Life after Loss points out…
1) I will not always feel as I do now.
2) I am doing okay. Grief will not destroy me.
3) I will make it through this experience just as others have before me.

December 17, 2007 (Monday)
Michele Drake asked Alaena and me over for dinner. I took Jagger. As Jagger and I were on our way to her house, Jagger started talking about baby Camden, and he said that baby Camden is “coot” (cute). I went along with him, and then he said out of the blue, “Like baby London, Mommy. Baby London is coot.” He said this with a big smile on his face. I was strong enough to say, “Yes, baby, London was cute.” Tears began to well up in my eyes as Jagger continued. “I like baby London, Mommy. I want to see baby London.” I reminded him that baby London was in Heaven and that we couldn’t see her now, but we would see her someday. I reminded him that baby London was with Jesus because he wanted her to feel better. Jagger got upset that he couldn’t see London now. He began to cry and say, “I want to play with baby London, Mommy! I want to see her.”

Can you imagine how this made my heart ache? It was so painful to know, first of all, that London was not coming back. But, it was just as painful to hear her big brother crying to see her and play with her, yet I couldn’t “fix it”…I couldn’t grant his request and make it better. I just prayed for strength at that point and cried. Thank goodness, it was dark enough to see Christmas lights – I quickly changed the subject when we saw a big Santa in someone’s yard. Oh, the joys of grief, that’s all I can say.

Thank goodness, we did have one funny thing happen tonight after we got home. Jonathan was changing Jagger’s diaper. As Jagger lay on the floor, he – all of a sudden – just called Jonathan a “dumbass”. I’m laughing just thinking about that moment and our faces when we realized what he said! Of course, we asked him, “What did you say?” He said it again and again and again (he could tell we were laughing as we turned our heads)! I know it’s wrong, but I got the camera out and video taped his first “bad word”! I asked him where he heard that, and he said “Aunt Naena”. Then, we had to call her. Jagger said, “Aunt Naena, don’t say dumbass. That’s not nice.” Of course, she started dying laughing and told him she was sorry. She kept trying to get him to say it by asking him, “Now, what did I say?”, etc. She’s awful! Anyway, it was hilarious at the time. Thank goodness he hasn’t said it any more. Thank goodness for the laughter that Jagger brings to us!