Connections

This is what a mean by the connections I talked about in my last blog. It happened today.

Molly called me just like she said she would. Yeah! She told me that she talked to the doctor who was working the neonatal unit, and he's excited about talking to me and Dave, and he has a lot to share with us. He has experience with Trisomy 18 babies, too. He gave her his office phone number. I am supposed to call and leave a message so either he or someone in his office (not sure which) can call us and set up an appointment (just to talk = free!) in the near future.

Here's the connection: While Molly was talking to him, he got up and went to his file cabinet. Now, apparently, this doctor is pretty disorganized and ADHD (sounds like my husband, which is a quality I love in him). This is important to know because he goes to his file cabinet (which is a wreck itself) and pulls straight out of it a funeral announcement of some kind from 1992 (or was it 1994?) from a baby who died in utero. He knew that the parents of this baby healed from their loss by talking to others. He called them and asked for permission to give us their phone number. Molly gave me that number, too. She once again assured me that Lily would be loved and cherished.

Sure there's a people connection here, but don't miss the connection regarding the file cabinet. I have seen connections such as this throughout my life, and I attribute it to the great Mystery--God. I am not expecting an extreme change for the better in Lily's condition, but these connections confirm that this is exactly, exactly, where I am supposed to be in this stage of my life. Who knows? Maybe it's just the beginning of a path I am supposed to be taking but have been either too dumb or too lazy to pursue it.

My heart swells and I shudder over the power this Mystery has had over my life. Rani, Autumn, Dave, and Gabriel have all been a part of it. And now Lily is. I know it is not going to be an easy road. Honestly, has it ever been? But I once again find comfort knowing without a doubt that I'm headed in the right direction.

Praise God!

Dave is waiting for his brick. Not a literal brick, but that something that figuratively hits you in the head and says, Wake up. This is what you should be doing with your life. Although I don't really know what I want to be when I grow up, I am not waiting for my brick. There have been too many times in my life when some kind of Mystery formed connections (not necessarily human) that somehow told me to go in a certain direction. That's how I found myself in South Africa in the summer of 2004.

That same Mystery has recently formed connections, and I give thanks to God for knowing that I have had enough for a while and that I needed a rest from the stress I talked of yesterday. I honestly believe He answered our prayers and sent an earth-bound angel to show us the way.

One of the reasons I've not held back telling people about Lily is because I believe that people have connections with other people who have connections with other people, and somewhere along those connections, we are bound to be introduced to someone who's either had a similar experience or someone who can counsel us or pray for us or someone who works in a medical setting.

A teacher at my school, Debbie, just happened to have one of those connections. She shared with her Sunday School group our situation. There just happens to be a neonatal nurse in her Sunday School group, and this nurse, Molly, offered to talk to us and gave Debbie her phone number.

I called Molly last night, hesitant, because I didn't know how to start the conversation. She started it for me by asking if I was seeing a specialist. That was all I needed to get the conversation moving. Not even five minutes into the conversation, she asked if we had chosen a name. I told her Lily, and from that point on, she referred to our baby as Lily. You just don't know how that speaks to me of how a person values her life. I can tell what kind of medical professional I'm dealing with by that one little act.

Molly praised both my OB and the high-risk doctor. She even admitted that the high-risk doctor didn't have much bedside manner, but he has a plan for everything and he is very knowledgeable. She told me I could give my OB her name, too. She suggested that I have Lily at University instead of Trinity because University has a Level 3 intensive care unit and that could be beneficial for me and for Lily.

So many other topics came up. . .

• get the ecocardiogram--this will allow preparation in the event cardiologists are needed
• have more ultrasounds--more "problems" may show themselves and the doctors will know how to react at her birth. Plus, it will allow us to get the correct team together
  
• the first hour of Lily's life will determine a lot
• the group that Molly works for will help us determine a plan that will meet the specific needs of our family
• due to T-18 babies not having the same problems, the above plan will be Lily's own specific plan
• comfort will be the #1 priority
• the three neonatologists we would be dealing with are all Christians. They believe that God is the giver and taker of life and that they are vessels of His service. They will even pray with us! Do you know how comforting this is to hear?!?!?
  

Molly is wonderful! Before I even called her, she had been in touch with the customer relations person at the hospital, telling her to expect our call. At the end of our conversation, she said she would take what I had told her to the doctors and find out more information for us. She'll be in touch on Thursday, she said.

As a little girl, I would play with my brothers' Star Wars action figures. Can you imagine my hand reaching down, grabbing the figure by the shoulders, and placing it exactly where I wanted it to go? That's exactly what I feel has happened to me, with God directing me. I've been picked up and moved to the door I've been searching for for months. A hope that began to fade has been enlivened.

After speaking to Molly, I told Dave all about what she said. He was smiling while I was telling him, so I asked what that was about. He told me, You're giddy. That's the perfect word for it because I was elated to have a release of the pressure that had been stretching me for the past few days, but even better--Lily kicked the whole time I told him. And even better than that--I felt Lily's kicks all day long today. That must have been some rush of adrenaline! (You should now know that many T-18 babies are not very active during pregnancy.)

I believe this was more than just answered prayers. I believe this is evidence of a miracle. I'm flabbergasted that our situation has taken this turn! I'm happily blindsided! For those of you who have been praying for us, thank you! Thank you! Thank you! It's so amazing knowing that there are people in the medical profession who will value Lily's life and not give in to the "incompatible with life" mentality. It is even more amazing that you are taking the time to pray for our family. . . and God has not only listened, he's answered!

Hard decisions

Just when I thought I had my emotions under control, I reached 28 weeks and the realization that this pregnancy won't last forever. There are so many decisions Dave and I will have to make in the next 12 weeks that I don't want to face, but I also know that I won't be capable of making those decisions at the moment they will need to be made. As much as I like to pretend I have things together, I have to admit that I don't. There are so many decisions to make regarding Lily and her birth. . .and her death. I've yet to find any of them that I'm comfortable with making. It suffocates my heart to know that a decision we make for her life to be comfortable might actually cause us to lose her. I cannot bear to think that she would be in pain.

In the near future, Dave and I will have to create a birth plan. This involves

• whether or not to have constant fetal monitoring. This is to keep the stress off of us if her heartrate were to fall.
  
• whether to have a c-section or not if Lily's heartrate falls after contractions during labor, which it is likely to do. I can see both sides to this issue, but I'll talk about them in another blog, maybe.
• skin-to-skin contact after birth--one decision I don't have to make.
  
• whether to resuscitate in the event Lily is not breathing and for how long. We know we don't want her on a breathing machine.
  
• whether to immunize, give eye drops, etc. after she is born
• handling--do we just want to hold her or do we want the doctors and nurses to do their routine procedures
• bathing--do we do it or does a nurse do it. This could be the only bath we are able to give her if she does make it through labor.
• rooming--will she stay with us or go to a NICUnit?
• surgery--will we opt for any surgery if she needs it to be done, knowing that only 10% of these babies live past their 1st birthday?
  

And then, there are the decisions we have to make on the birth plan in the event she is stillborn. Since that is a possibility, we also have to make funeral plans. I've never had to plan a funeral. I have no idea what's involved, and I just keep putting off calling the funeral home, but I'm so overwhelmed with decisions that doing it would be another check I can put on my list. I think I'm just waiting for the day when I can call and not cry over this situation as I talk to the director.

What if she lives? There's something else Dave and I are dealing with. How are we going to care for her? One of us might have to quit work. How will we handle that financially? We've already sat down and looked at our bills. OK. What can we sacrifice if one of us has to quit our job and can we afford that? What will life be like? Are we going to face a two-hour feeding interval? I'm not ready to face these decisions, either.

Then, there are the questions about coping. Will we cope? How are Rani and Autumn going to handle this? They are grown girls, so they aren't as dependent on us, but will we be able to give Gabriel the care he needs? What are we going to do with him while I'm in the hospital? I'll be there with Lily all the time, of course, but what if Dave doesn't want to leave either? Where will Gabriel stay? Who will take care of him in those three days?

So if you pray, and you are praying for my family, please pray with us that (1) we are able to handle these difficult decisions, that we not get so overwhelmed, (2) that we make the right decisions, and (3) that we encounter professionals that will help us make the right decisions, those based on the value and respect and dignity of life and not on the prognosis of death. I thank you for the time you spend with us in your reading of this blog, your thoughts, and your prayers. I am choked for words, but I am so thankful for your support.

Blogs

I first want to say that if you've tried to leave a comment and haven't been able to, I think that might be fixed now. It's funny how blogs work. I basically cut a portion out of my HTML and pasted it right back in the same spot. Amazing!

Speaking of blogs, if you haven't noticed the blogs that I follow, take a look at them. They are over on the right hand side of the page. In my list, you will see the blogs of two very special people in my life: my daughter and my husband.

Rani's blog, You Can Only Wake Up Once From a Dream, is not always about Lily, but if you want the perspective of a teenager and how she is dealing with a life that is surrounded by the fact that her little sister's life is fragile, you'll get it. I'm amazed at how much love she already has for her unborn sister, and I know she worries deeply. Please, if you've put us on a prayer list, remember to include her and Autumn.

Dave's blog is called Letters to Lily. One day, he was talking to Rani about life and college and other issues, and he realized that he probably won't ever get a chance to share these life-learned lessons with Lily, so he has decided to post letters of advice to her. They are sweet and endearing and tender, and his voice speaks as if he were holding her in his arms.

Another blog that I follow is A Journey of Love and Faith. It is about Timothy, a little boy with Trisomy 18, who was able to give his parents and brothers and sister joy for 2 hours and 50 minutes. Jennifer, his mom, amazes me with her strength and her faith in God. I have been very fortunate to have her as someone I can talk to, for she has been through much of, if not more than, what I'm going through.

Praise You in This Storm is another blog I follow. Little Maddie does not have Trisomy 18; she has Triploidy, where all of her chromosomes strands have an extra chromosome. Her mother, Loni, has a 1% chance of carrying to term. Maddie is a fighter because, if I'm not mistaken, she's due not too long after Lily is! Loni and her husband have incredible faith, and they, too, are inspirations.

The final blog I'd like to share with you is O Love That Will Not Let Me Go. It is of Magdalena Grace, a little girl who recently passed away due to complications from Trisomy 18. She lived for roughly 150 days, I believe. Once again, here is an incredible story of faith and hope and love.

These blogs have become a part of my life. In some ways, they mirror my life. I know it takes time to read these blogs and even mine, but I've learned so much from the people who have taken the time to post. They are all true inspirations.

No regrets

I had another doctor's appointment today, one of those routine four week visits. Once again, I underestimated how difficult it would be sitting around all of those supposedly normal pregnancies. The couple I sat across from was there for an ultrasound. This was going to be a "keepsake" ultrasound, and they were going to get to see their baby in 3D/4D. I've not scheduled a keepsake ultrasound.

I refuse to suffer from what I call the Schindler Syndrome. If you've ever seen the movie Schindler's List, then you know at the end, he regrets the little that he didn't do. I could have sold this, he says, as he looks at his watch, realizing the number of lives he could have saved.

Regret. I try to form my decisions based on what I will not regret, but sometimes, I just don't know. For instance, will I regret not scheduling a keepsake ultrasound for Lily? That thought just seems so superficial to me when compared to all the other decisions we're faced with making right now--decisions that could possibly delay the inevitable, maybe. Decisions no parents should ever have to make.

Once I got into the exam room and looked around at all the birthing pictures, I lost it. There was the ultrasound poster, with the ultrasound pictures of the perfect little babies, and there was the cross-cut picture of the birthing process. That one got me thinking: how ironic. Here I am, loving Lily so much, and labor, the work of my body, may send her over the edge. Now, just so you know, I'm not at all blaming myself for what may happen to her. It's just that I know the extra stress labor can put on Trisomy 18 babies.

My doctor frustrates me. He can't get "incompatible with life" out of his head. I know he's just trying to keep our hope in check, but we don't need him to do that. We feel as if we're doing a good job keeping our hope in check. What we need is to know that everyone who handles our child will respect the life that we are fighting for. As someone from a discussion group I participate in said, She is compatible with MY life. And she is. By choosing to continue with this pregnancy, we willingly chose everything that goes along with it--the fight, the joy, the heartache, the unknown. We had no doubts. We will have no regrets with that decision.

Laughter is the best medicine

When Dave and I were married, we had a beach wedding (for those of you who didn't know this). We didn't want the formality of a traditional wedding, so we chose vows that would reflect a more informal tone. I think we found some vows online and changed them a little to reflect our own personalities. Here are his vows:

From this day on I choose you, Jill, to be my wife,
To live with you and laugh with you;
to love you completely and straightforwardly
because I know no other way.
To you, I promise to share with you all that I have,
to stand beside you in good times as in hard times
to wipe your tears and to hold your hand
to play with you as much as I can
to bring out the best in you always
until our lives come to an end.

As beautiful as I think our vows are and as important as I believe all of the lines are, there is one line that stands out to me: to play with you as much as I can. It is so significant at this moment that we continue to play. We have been able to hold on to our childlike spirit and not release it to bitterness.
Don't think that we play all the time. We are adults, you know. But there are so many nights when we go to bed and laugh and laugh and laugh. I told Dave how it reminds me of when my nana would come over to my house when I was younger, and we'd lie in bed and do the same. My parents would yell at us down the hall and tell us to go to sleep. I have such fond memories of our laughing in bed.
Lily feels it. She is most active when I crawl into bed. She knows. She must like those hormones I'm shooting her way from all the laughter. I'm sure it's a whole lot better than when I'm choking back tears.
It's not only that, though. I think she's already a Daddy's Girl. She knows that I'll be lying against Dave, and she'll feel his touch. Last night, she was delirious! I've never felt her move like that, but she did this as his back was against my belly. She definitely knows his touch. I know how she feels. I'm guilty of that same sense of delirium still.
I know that Trisomy 18 babies are not generally as active as "normal" babies are. It makes me wonder if a small part of it has to do with the sadness that has invaded our lives and lingers even when our thoughts are somewhere else. It's that thought that drives me to try to not give myself over to that sadness and makes me appreciate the laughter that I am able to share. I think Lily appreciates it, too.

Remember the trees

Dave tells this story: It is about a biodome, which was an enclosed ecological experiment that served as a fully controlled microcosm of the planet earth. The analogy that can be drawn from the story is about the trees in the biodome. Apparently, scientists were baffled as the trees in the biodome would not grow as strong as they should. The scientists eventually realized that the problem was that the biodome was designed without wind. Because there was no wind, there was no need for the trees to put up resistance. You see, the resistance to the wind causes micro-fractures within the tree's trunk. As the tree heals, it is strengthened, allowing the tree to not only grow tall but to grow strong.

Dave told this story to me a few years ago, and it has been with me ever since, solidifying in me the awareness that we need resistance in our lives. It makes us stronger, just as it does the trees in the biodome.

On a similar note, I have been reading a book that a dear friend--we call her Momma Ray--gave to me and Dave. It's called Holding on to Hope, and it's about Nancy Guthrie's journey through suffering the death of her daugher, Hope, who lived for 199 days. In one of the chapters, she talks of suffering. Her stance is that suffering is what allows us to refine our character and it helps us to become stronger.

I'll tell you that my own suffering has made me more compassionate, and without any suffering in my life, I would not be a very caring person. As of late, a piece of my heart I didn't really know I had has gone out to others who have suffered in ways like I have with Lily. I've been able to empathize, not just sympathize.

Guthrie goes on to tell a story about a man named Bob Benson. At a retreat, he asked a group of people to fold a piece of paper in half. On the top, he told them to write down all the bad things that happened to them. On the bottom, he told them to write the best things that ever happened to them. Amazingly, many of the bottom responses mirrored the top responses. In thinking back, I realize that this is true for me! Many of the things I would consider to be bad things that have happened have ended up being good things. For instance, having Rani and Autumn at such an early age was a pretty tragic and unexpected event; however, both of their births ended up being the best things that could have happened to me. I became a better person as a result of being forced to grow up and experience the hardships of a teenage pregnancy. There have been so many other events in my life that I could list, both on the top and on the bottom.

Guthrie goes on to say that "God uses painful, difficult experiences of life for our ultimate good." Our ultimate good. Suffering? Yes.

I could choose to be bitter, but what good would that do? I know deep in my heart that this suffering will produce an ultimate good. That doesn't mean I want this suffering, but it does mean that I will be completely open to the possibility that somewhere down the line (it might be years from now), in a way that I may never completely understand, an ultimate good will come out of this experience. There is something exciting about that!

I guess it's because of what I know about the trees.

Love pouring

Today, something very weird happened. I was lying on the couch, considering a nap, and I started thinking about Lily. I projected my thoughts to the time of her birth. I thought about two of the options we can choose when she is born: putting her immediately on my chest when she is born and skin-to-skin contact. I must have been totally wrapped up in that thought because the next thing I knew, I just felt this adrenalized love pouring from my heart. Then I felt Lily kick, and it jolted me back into the moment. I had not felt many kicks this morning, so I couldn't help but wonder if she somehow felt that love pouring out of me.

I'd like to think that it's that love that will enable her to survive, that will enable her to rise above this condition. When I see the ultrasound pictures and the doctor has nothing to comment on, I can't help but wish it to be so.

Speaking of the ultrasound, I called my high-risk doctor to ask about the banana-shaped cerebellum. The sonographer looked at the pictures of her spine and said that the spine is fine and that this isn't a case of anencephaly (thank God!) I asked her about the cerebellum, and she said that what she saw wasn't as banana-shaped as the other sonographer led us to believe. From the little amount of research I've done, it seems as if the cerebellum's main function is to control movement. I'm trying to find out if it has anything to do with the involuntary muscles, wondering what it is that causes most of these babies to be unable to survive.

But it may have to do with something else. I read a quote from another blog the other night. I think the majority of you will praise this quote as I did. I'm sorry I don't know the author; all I know is that the child's name is Sabrina.
Ultrasounds cannot tell you about the strength of the human soul and the desires of an unborn child.
Anyway, it touches the heart of what the medical community just seems to have trouble understanding. But even if Lily doesn't have the strength to make it to her due date, I celebrate each day knowing that she had the strength to make it to today. I thank God for every day that we are closer to April 21 and for Lily's strength.

Meet Lily Grace

This is a 4D image taken at our most recent ultrasound on January 14, 2009. This is Lily Grace. When I saw this image, my first impression was how much she looked like Gabriel, her brother. Dave saw it, too, but added that she has softer features. Doesn't she look peaceful? Even though it's an ultrasound, I think she looks beautiful, too.

I have had a lot of people tell me after reading these blogs that I am so brave, that I have so much strength. I think I've misled a lot of you. I read a quote the other day that fits me perfectly. Courage is not the towering oak, but the fragile blossom that opens in the snow. Please do not look up to me. I am not the towering oak that I'm afraid some people see me as.
Fragile. That's more like it. I open in my own snow, this cold period in my life, because I have to. I'm not trying to rise above this as much as I'm just trying to push my way through, past the hurt.
Here's an analogy: Gabriel has been waking up around 1:00 in the morning. I've been going to bed later than I should be, but I still have to wake up when he cries out. The other night, he woke around 12:00. I got up with him and rocked him, but he was quite restless. After I went back to bed, he cried out again, so I had to get up to check on him and calm him. It was almost 2:00 before I was able to go to sleep for the night. Did I want to get out of bed, as tired as I was? Not at all, but I had to. For him.
It's getting late, and while I have so much more to say, I've got a friend to call and some sleep to catch. Where does the time go?

Ultrasound Results

Today, Dave and I went to our second Level 2 ultrasound. The primary purpose of this ultrasound was to get a better look at Lily's major organs so we will know what to expect, if that's even possible.
Ultrasounds are emotionally exhausting for me. Just sitting in the waiting area, I got a kick, and it reminded me that I was about to face a picture of my baby, squirming about. Then there's the reality of the situation--this might be the only way I'll be able to see her move. I had to pick up a magazine that I was not interested in just to focus on something else.
I had compiled a list of possible complications associated with baby's with Trisomy 18 last week. It was my own sort of list of things to (hopefully) mark off. Dave and I are no experts, but we've done so much research. I had to look at this as a scientist would, otherwise, my emotional dam would burst.
At first, it wasn't that hard. I told the sonographer to tell us all that she could and to be honest with us. We asked her about certain areas and what they mean. She looked at the brain, the spine, the kidneys, the hands, the feet, the stomach. And then she got to the heart. It's so hard to watch that one organ that beats life and to know that the 153 bpm could be fooling us. I'm sure the sonographer could feel my stomach rise and fall as I tried to keep the sobs from erupting. She saw my tears and asked if I was alright. I would be.
I do not know what to say about the results, whether they are good or bad. I would like to say that this ultrasound gave me hope, but I'm so afraid to get my hopes too high. I know the nature of this Trisomy 18.

The brain. Normally, the cerebellum looks like a peanut. In Lily, it looked like a banana. I have no idea what the implications are for this, but I do plan to research it. Another possible: there seemed to be agenesis of the corpus collosum. I know that the corpus collosum is the midline of the brain and that it is needed for crossover of information from left to right. The sonographer said she had trouble seeing it, but there was the presence of an artery that indicated the presence of the cc. The doctor said that even "normal" babies can have malformed cc's, but they usually have learning disorders. Honestly, I have no idea what either of these two findings mean for Lily. I don't know if this will have any bearing on how her brain handles her ability to thrive. After doing some quick research, it seems that the banana sign is an indication of neural tube defects, such as spina bifada or anencephaly, which is not compatible with life. I don't know why, but the doctor did not express any concerns over this.

The hands. Lily did not open her left hand during ultrasound, and the sonographer believes she saw overlapping fingers here. This has no bearing on her health, but it is a strong marker for Trisomy 18.

The feet. They looked fine, but she seems to have "sandal-gap" toes. This, too, can be found in "normal" babies and has no bearing on her health.

The kidneys. The right kidney seems normal. The left kidney is either missing or a pelvic kidney. People can survive off of one kidney, and people can survive from a pelvic kidney.

The esophagus. It seems to be connected to the stomach and all gastrointestinal organs seem to be functioning.

The heart. This has been our biggest concern. I still don't think we have all of the answers. Lily's heart has four chambers. According to the sonographer, the outflow tracks in the left ventricle were questionable. They seemed bigger than normal. According to the doctor, there doesn't seem to be a problem. Who to believe? We have the option of going to see a fetal cardiologist for a closer look at the heart. What to do?

I can't say that I feel much better knowing, but I didn't expect to. We still don't have any idea what this means for Lily. I guess it's good that what was seen didn't raise any flags for the doctor.

I think I'll keep my hope in check and continue to celebrate each little kick that I feel. . .one day at a time.

I thank you for your continued thoughts and prayers and support. It all means so much for me. I stumble when it comes to praying for Lily, not knowing what to ask for other than she not feel pain and that we grow from this trial. I would love to be able to look into her eyes, to hear her cry, for her to nestle into me or Dave or the girls. I would love to add to that list. But what if this is not how it is supposed to happen? I struggle so with that. I'm sure your prayers are braver than mine, and for that, I thank you.

Yea, though I walk through the valley. . .

. . .of the shadow of death.

I am in a valley. Not just a valley. That valley. The one where Death is casting his shadow, lurking behind his opportunity to strike. I just don’t know when that opportunity is going to stand aside and allow Death to beckon our little girl, “Come.”

. . .I will fear no evil.

I must confess. At one time, I was afraid. It was not enough to lean on God or Dave or anyone else who offered to build a fortress of strength for me. I feared the unknown. Would I miscarry? Would Lily be stillborn? Would I have to put a lifetime of love into 22 minutes or three hours or three days? Could Lily survive? This fear gripped me no matter where I turned.

I do not feel that way today. I wish I could say that God took that fear away or that Dave was my gallant knight who slew her. Actually, it was the words of my assistant, Linda-- words that had nothing to do with Lily, but these words gave me a new perspective on this unknown, taking away my fear.

One day we were talking about how Dave and I have discussed moving to Charleston. I talked about how I’ve lived here all of my life and that moving would be a little scary for me. Oh, she said, I loved it when my husband was in the Air Force and we never knew where we were going to live next or even when we were going to move. I just thought it was such an adventure! Here she was, faced with the unknown, and she looked at it as if it was an adventure. There I stood, faced with the unknown, and I looked at it with fear. Maybe I should change my perspective. Maybe I should look at this journey as an adventure. This might take a while.

Actually, it didn’t take as long as I expected. I don’t know how I was able to change my perspective within a matter of days, but I guess my desire to let go of that fear was strong enough that I could do so.

I do not look at our journey’s unknown with fear today. I face it as if it’s an adventure. The road is not smooth, but I am well-equipped with the thoughts and prayers of those around me. I am not alone. Dave is my companion on this journey. My family is right by our sides. There is a shadow, but we have The Light. There is no need to fear anymore.

On a side note, tomorrow I go for my second Level 2 ultrasound. I have no idea what to expect, but I'm holding on to the last ultrasound results where the doctor said he didn't see anything wrong with the heart. Lily's kidneys are questionable, so we'll see. It is hard for me to ask for prayers at this point. I want to ask for a healthy heart and kidneys and other organs, but what if it is in God's plan for Lily to have problems? How can we ask for what we want and respect His will at the same time? Who am I trying to fool? He knows my heart. I don't have to ask. He knows that in the deepest crevices I long for a healthy baby, and if that's not possible, then I long for a baby with minimal problems, and if that's not possible. . .

And yet another side note. I have been following this blog called O Love That Will Not Let Me Go. It's another Trisomy 18 blog. This one is about a little girl named Magdalena Grace Roberts. I can't remember how long little Magdalena has lived in our world (not quite a year, maybe), but I just read today that she has gained her wings. I am deeply saddened for this family. Even though you may not be familiar with their story, please add them to your thoughts and prayers tonight.

Tribute

I may be biased, but I have the most wonderful husband in the world. Without him, I would not be able to make it through this endeavor. I have no idea how to thank him for that. He knows when I'm having a bad day, and he offers something to lift my spirits. For instance, after the heartwrenching ultrasound at my OB's office, he knew I wasn't up to coming home and cooking. He offered to get me sushi. (That's a big deal to me.) We make coupons for each other at Christmas, and he always thinks of the best ideas. He knows when to stop everything he's doing and hold me and my sadness, and he knows the moment that sadness departs and then we have fun. He would give me the world if I asked for it.
The most touching gift Dave has ever given me (and I choke up every time I share this) is by no means extravagant. He knows I wouldn't have it that way. After Gabriel was born, he gave me a card, thanking me for carrying his son. I hold that gift so close to my heart and pull out the thought of it every now and then. I know he is truly grateful. And I know he feels the same way as I carry Lily. I wouldn't be surprised if his gratitude ran a little deeper.
Dave is the type of person who strives to do the right thing. I have seen him give up his own time to help others, and he truly wants to help make the world a better place. We've talked about decisions we've been faced with, and countless times I've heard him say, "It's the right thing to do." That motivates him. Plain and simple.
I am so fortunate that he is my husband. And I am so fortunate that we both agree that keeping Lily is the right thing for us to do. We both know that it's not going to be easy, but we also both know that doing the right thing isn't always the easiest.
So much of my strength comes from leaning on Dave. I pray that my weight doesn't become too much to bear, but I don't think he would ever complain about that. On the flip side, I try to be the same for him. I have no idea how to express my gratitude, but Dave knows that I would go to the moon with him. That means a lot to him.
I just finished reading the book The Last Lecture. Randy Pausch, the author, is dying, and he comments that he will be the first man to fall in love with his daughter. I'll take that one step further. Dave will not only be the first man to fall in love with Lily, he may be the only man. I can't think of a better person to take on that task.

The miracle of life

Just so you know: Unless otherwise mentioned, from this post on, everything will be present day.

The brain is such a fascinating organ! If I had the energy to go back to school, I could see myself becoming a brain researcher, but there are times when I question my intellectual ability. Still, it's a thought.
We've seen ultrasound pictures of Lily, and despite the choroid plexus cysts in her brain, there have not been any other problems. We go on January 14 for another Level 2 ultrasound for a closer look. I pray her problems will be VERY minimal, but even that won't offer me much comfort.
No two Trisomy 18 births are necessarily alike. Sadly, some babies are stillborn. My OB's practice just had a birth where the baby lived 22 minutes; my pediatrician shared with me of a birth where the baby lived three hours, then he went on to share a child who lived to be 8 years old. Apparently, heart problems are one of the major problems. The doctor will be looking closely at Lily's heart. Of course, there are kidney problems. Lily's kidneys are questionable. Omphalocele, where the intestines and other organs are outside of the body, can also occur. Then, some of these babies just "fail to thrive." Some problems show up on the ultrasound. Others aren't so visible. Even though problems aren't noticeable, a doctor can't really predict the outcome of the birth.
Here's why: the brain. Remember those choroid plexus cysts? They are a strong marker for Trisomy 18, but even normal babies have them. They go away. They may even go away in Lily. But in Tri 18 babies, brain damage occurs. My assumption is from the CPCs, but I can't remember the findings behind that.
This isn't your every day, learning disability, handicapped brain damage. It all depends on the moment of birth, and this is an incredible miracle of life.
From what I've been told, the moment of birth holds an unbelievable amount of firings in the brain. These firings encourage movement, crying, functioning. These firings may not happen properly in Lily. She may have a heart that has no problems, but if her brain doesn't fire the right shots, or any at all, her heart won't function properly. It is her brain that could keep her from breathing and feeding at the same time. It is her brain that might cause her to "forget" to breath at all. Of course, it is her brain that will deem her "severely mentally retarded."
That's her brain. That's not her heart. Nor mine. Her heart will feel the love that Dave and I, the girls, our family, our friends have for her. It doesn't take an intellectual to understand love.

I See Love

Oh, I hope I haven't misled too many people! The ultrasound I referred to in yesterday's blog did not happen yesterday. I'm still in the past, trying to catch everyone up to speed. Thank you for the extra special thoughts and prayers, but it's not been too bad of a week.

For any of you who are wondering why I chose to call this blog "I See Love," here's the background information. As I've said before, there are people in the medical community who look at this as futile. While the doctors haven't come out and said anything specific, there's this hint in the air that they encourage pregnancy termination. Maybe I've said this before, but there's this overwhelming protective feeling that I have for Lily. I just want to wrap my hands around my belly and say, "You are not taking this child," as if I have to fight really hard for her life. But isn't that what I should be doing? I mean, isn't she doing that for herself?
There are some who don't look at this from a medical perspective but look at it more from a convenience perspective. Their argument against keeping the baby is that it's going to take a toll on our finances, our family, and our sanity. I've spoken to other mothers who have surviving children, and I know this will not be easy. But the right choice isn't always the easy choice. For me and Dave, this is the right choice.
There are some who may even criticize us for keeping a child who is a burden to society, a "retard." She is my burden to bear.
I truly respect all of these views. But they are not within my way of thinking. The way I've chosen has been because I know no other way, for myself. I have to give Lily a chance.
The way Dave sees it is from the "golden rule" view. He would want someone to fight for him, so it's only right that he should fight for Lily. I'm very fortunate that both of us agree.
So others see a child "incompatible with life," a life made difficult, a burden, maybe even a pregnancy in vain. Well, I see love. Plain and simple.
Now, I wish this phrase were my own, but it's not. Once again, I am inspired by song. When the movie The Passion came out, a companion soundtrack accompanied it. In the song, we are told that some see Christ as this, some see Him as that. But the singer sees love. I've included the song in my playlist below, in case you're curious. This song hits the core of what I believe in for Lily. I sing it in my head numerous times a day.
As if that isn't enough of a reason, here's the kicker, and this is what I told Rani (my daughter). If I sever this love, then I sever Love. I just can't do that because I believe with all of my heart and soul in that Love. It is that Greater Good.
Besides, as I also shared with her (and this comes from a book I read), "a person must be proud of the things he chooses to do." Ultimately, I would not be proud of myself for choosing to terminate this pregnancy. I would be full of regrets. I will not live with regrets.
Our path is not going to be easy. It might not be cheap. There will probably be sadness. But I promise you, there will not be regrets.

Another ultrasound

I was aware from pretty much the beginning that my worst days were yet to come, but I had never expected one of them to be so soon. I never saw this one coming. I had a doctor's appointment with my OB/Gyn. Usually, Dave went with me, but this time, he had some things to take care of at school, so he didn't go. I had told him the night before that he didn't have to go, but if he got finished early, give me a call. You see, an ultrasound was scheduled for that day, but I didn't know if they were going to go through with it.
My doctor's office is weird. You go into a waiting room, and wait. Then you go back and see the lab techs for blood, bp, weight, etc. Then they put you in another, smaller waiting room. It began to hit me in this smaller waiting room that maybe this was a mistake. I was closely surrounded by pregnant women who (I assumed) had "normal" pregnancies. Thank goodness I had a book; it was a good distraction, but I had to try hard to be distracted.
I was called into the ultrasound room. The sonographer went through the routine stuff and told me to get up on the table. Once again, I swallowed hard. It's not always easy to tell people of Lily's condition, but I wasn't sure if I even needed to go through with this. The girl told me that she had never seen a Trisomy 18 ultrasound before, but in this past year, she had seen three.
How can I express how hard it is to look up on that screen and see what looks to my ignorant eye to be a healthy baby yet to know how fragile the life I beheld actually was? I sobbed, again. I know the sonographer felt bad, so I told her not to worry that it was the first ultrasound I had had since finding out. My heart hurt so badly. She told me that Lily was moving, movement I had not felt much of, couldn't even feel while she saw all that was going on. For lack of better words, it was a touching sadness. I asked her about certain problems I knew characterized T-18 babies, but she really couldn't see all that much. She did see three vessels in the umblical cord (sometimes there is only one). That was good. No cleft palate/lip. The feet seemed fine. Size was about 1 week off. That happens with these babies. A little low on the ambiotic fluid, but not much. I think she was trying to be positive. For the life of me, though, I don't understand how all these good markers are here, yet every cell in my baby's body has that extra chromosome and tries to label her "incompatible with life." When she was done, the sonographer must have really felt bad because she printed a lot of pictures for me.
I cried a little more. As I was leaving the room, Dave called. I lost it out in the hallway. It was so hard to speak. Dave just said, "I'll be there in a minute."
I was led into the doctor's office, not the exam room. I sat in the chair with my face to the wall and cried. And cried. When the doctor came in, we talked about Trisomy 18. He reminded me that this child is IWL. We talked about hospital choices, our choice for keeping or terminating, specialists we might need, how much we should put into the baby's survival. These aren't routine doctor visit questions. He told us that this year, his office had seen three trisomy 18 babies. One woman had recently had her child. It lived 22 minutes. Twenty-two minutes. I turned that number in my mind. How do you deal with that? How are we going to deal with that if something similar happens to us? How will Rani and Autumn deal with that?
We left the doctor's office, deflated. I should have known that appointment wasn't going to be easy. I don't know why it never even occurred to me that it wouldn't.

What's in a name?

When I was pregnant with Gabriel, Dave and I chose boy and girl names since we didn't find out that he was going to be a boy. Lily Grace was the girl name that we had chosen. It was the name we thought was perfect for the daughter that we may have some day.
When we found out that we were once again pregnant, the assumption was there that if this baby was a girl, we would name her Lily Grace. Our plan was to once again not find out the sex of the baby. I never have wanted to, loving the surprise at birth, like getting a gift at Christmas.
When we found out that our baby has Trisomy 18, I told Dave that I wanted to find out the sex, since the amnio would give us a definite answer. It was totally out of character for me, but I felt as if referring to this baby as "she" or "he" instead of "it" would give the baby the dignity of being human, something the baby might not get a chance to experiene.
The day before Thanksgiving, I got a call from the genetic counselor at the high-risk doctor's office. She just wanted to let me know that the full amnio results were in and that yes, the baby did have Trisomy 18. I swallowed hard. Could you tell me the sex of the baby? It's a girl. OK. Thank you.
What a way to give some news! What a way to allow me to spend a peaceful holiday! I choked back the tears. A girl. A little baby girl. (As a side note, more girls survive Tri-18 than boys.)
I thought about the name we had chosen. This perfect name. I'll admit that at first, I was mad again. I hated that this had happened. It was almost like this name would be wasted. Again, I had to give rise to my anger and let it sink on its own.
The longer I carry this child, the stronger I feel for her. My prayers for miscarriage have changed to prayers for a moment to look Lily in her eyes, a moment for me and Dave (and our family) to shower her with our love, so she'll know. I don't care how mentally inept she is, I know she will know. If only we get that chance.
The more I thought about it, the more I came to realize that Lily Grace is the most perfect name this child can have. Lilys are symbols of purity. If she falls within the statistics that say 90% don't live longer than a year, she will have such innocence that she will be nothing but pure. If she beats those statistics, her mental ability will probably keep her that way. Either way, it's appropriate. Grace. I think of grace as showered blessings, God's blessings, and I know He will shower this child with His blessings, no matter the outcome, for this is a special child. A dear friend of mine shared one of her favorite verses with me: "Consider the lilies; they neither toil nor spin, yet even Solomon in all his splendor was not arrayed like one of these. " I cannot think of a better name.
That Thanksgiving Eve night held a moment that completely blew my mind. I called my mother to tell her about the results. I shared with her that we found out it's a girl. It was so hard telling her that. I cried. I will never forget what my mother said nor will I forget the way she said it. I admire you. Me?! My mother admires me? Shouldn't it be the other way around? I was touched beyond explanation, humbled even. I did not deserve such honor. I play that statement in my head when times are hard, and it renews my strength. My mother admires me. My wall is strong.

Theory of relativity

The day the results came back, a co-worker had come into the library where my principal was waiting in a rocking chair to scare her. Needless to say, she screamed when he jumped out of the chair. But then she started crying. We found out that the crying was not because he scared her so badly but because she was upset about her truck. It was broken, and the repairs were going to cost $500, which she didn't have.
After I got home and processed everything the day had brought, I got mad. I couldn't believe, in the wake of all of my grief, that she could be so upset as to cry over $500. If only my problem was coming up with $500 to fix a vehicle instead of what we were dealing with. (I've had a lot of those "if only" thoughts lately.)
Now before you think too poorly of me, do remember that anger is part of the grieving process. I have not been angry at God for this, but I did get mad over this situation.
After I cooled down, I got to thinking about it. I couldn't believe that I honestly got angry over this. It dawned on me that it's all about relativity. My co-worker's reaction to her situation was completely relative to her situation. That was possibly the worst thing she had to deal with at the time. She had a right to cry, if that was the emotion she needed to express. On the other hand, I had my own situation, and my reactions were relative to that.
That was a pretty profound realization for me. Taking it a little further, I realized that it's that way for everyone, and that my situation may not be the worst situation a person has to face. As a matter of fact, a co-worker of Dave's came to him telling him that she had lost three children of various ages. Our situation is nothing compared to hers. I am not a mother living in a third world country helplessly watching her children starve. For this, I am thankful.
Does this diminish our situation for us? Not at all. For the moment, grieving the loss of a "normal" child and the possibility of never being able to share our love with this child is the worst of our situations, but it does add an interesting perspective and understanding to others' suffering. And it does allow me to focus on all that I do have to be thankful for because I'm not suffering for worse situations. Nichole Nordeman explains it all too well in her song, "Gratitude." If you don't know that one, I highly suggest it. If you scroll down to the bottom of the page, you can hear it. I highly recommend her, by the way. She's a very talented and profound songwriter, and I've found inspiration and comfort in many of her songs. Thank goodness for music, huh?

The news. . .

Dave and I wanted more children, but after this experience, one night I told him that I just couldn't go through this anymore. The stress was unbelievable. We told family members. I broke down and told my assistant at work what was going on. At this point, it was so hard to hold in the sadness, but sadness was what I needed to express. It was so heavy. I felt like I was having to learn to breathe again. While that part has gotten better, I now walk around feeling as if I'm carrying a heavy blanket. I can smile and laugh and even feel really good, but deep down I still carry this heartache.
While we were waiting, we both would go through our ultrasound experience. Like I said, the only two markers seen were the cysts and the missing pinkey bone. Surely this was just a fluke. Surely we'd get good news. We even have an ultrasound picture where the baby is holding its hand straight out. There seem to be five healthy fingers.
And all the while I'm thinking, this just can't be happening to us. One out of 3000 (or is it 6000 or 8000? I've heard all three.). The odds just can't be stacked against us in that way.
Waiting allowed for a lot of soul searching. And wait we did. The call with our results never came on Friday. Nor did it come on Monday. I had the biggest headache that day from the stress, and at the end of the day, I called the doctor's office. Oh, the doctor had a conference to go to, and we're not allowed to give you the results. They're on his desk. We'll have him call you first thing tomorrow.
The next morning, I told my assistant that if the phone was for me, interrupt my classes. They called during a Kindergarten class on my cell phone (which I had lying out just in case). I took the phone outside and had to listen as the doctor told me that the results showed Trisomy 18. My heart fell. He suggested terminating the pregnancy because nothing would come of this. I asked him about the baby's heart, and he said he'd like to take a better look at it. He had seen no evidence of problems the first time around, and since this organ had already formed, if there were no problems, there wouldn't be. I have been holding on to that small piece of information ever since.
But sadness overcame me. My assistant suggested that I go home, but I knew I would just be miserable there, so I stayed at work. Once again, I would have to tell Dave the news I never wanted to have to speak.
That night was the saddest night I've had. There were no words. Only a lot of silence as we internalized what this meant. I wrote a note to my faculty and explained the situation. Here's a copy of that note:
Dear Teachers,
There is no easy way to even begin to say what I'm about to share with you, so please bear with me if I ramble. After having an amniocentesis, Dave and I found out that our baby has Trisomy 18. Basically, this is when the 18th chromosome has three instead of two copies. Before eleven days ago, I had no idea what it was. I wish with all of my heart that I could share something good about this. Chances are I will miscarry. If not, the baby could be stillborn. If it survives, it probably won't live longer than a few days. Most babies with Trisomy 18 don't live past their first birthday.
We are in shock. I mean, there's a 1 in 3000 chance of this happening. How invincible we felt!
It's not that I don't trust God, I do! But I'm not praying for a "normal" baby. If it's His will to give me and Dave this child, no matter what the outcome, I accept. Reluctantly. Instead, I pray for strength for me and my family and for the openness to be aware of what I'm supposed to learn from all of this. And for my baby to not feel pain. I welcome your prayers as well.
Please don't shy away from talking to me about this if you feel compelled to do so. I talked to my mother last night and she said, "I don't know what to say." That's ok. Neither would I in her situation, but I still need to talk about it. That's my personality. I may cry, but I welcome that expression of my feeling, especially if that's the emotion I need to help me get through this trial, but please don't feel uncomfortable with it.
I feel silly sharing this with you, but I'm being totally transparent. I feel as if I have had to learn to breathe all over again, around the pain we are all feeling. But there is so much to be thankful for! I have two wonderful daughters and Gabriel (oh, what am I putting them through with this?), friends, family, a great place to work, great experiences. My list goes on. Hopefully, to also include a beautiful son or daughter, regardless of his or her time spent with us.
A new journey has just started. This is the most frightning one because I have no idea where it's to take me. I really need to stop focusing on that and try to ground myself in today. This is not easy.
Thank you for being the wonderful faculty that you are. Thank you for understanding and for being patient with my story. And thank you for your prayers.
Love,
Jill
This is just the way I had to deal with it, and it continues to be the way. Dave is more silent about it, and I totally respect that. That doesn't mean that we don't talk about what's going on, we do. In detail. But I need to get this out! Actually, the more I talk about it, the easier it is to not break down when I talk about it. And I hear others' stories and I learn from others' experiences. Knowing that there are people praying for us gives me so much strength! I told Dave that there is going to be a day when neither of us will be the strength for the other. We will have to rely on the strength of others. I look at it as if they are out there building a wall for us to lean on. I check the strength of that wall occasionally.
Like I said in the letter, I'm not praying for the miracle of a healthy "normal" baby; however, I have told God that if he's willing to give us one, we're certainly willing to take one. Strength is one of my prayers, but I also pray for wisdom in the decisions we will have to make. That has been the hardest to think about, for there are decisions we're going to have to face that I wouldn't want my worst enemy to face.
I totally believe that God will never give us any problem that we cannot handle. I guess he thinks Dave and I are pretty special people to be able to handle this situation. (And I say that very humbly.) The thing about Trisomy 18 is that no two births are necessarily exactly alike, so even if we know the problems facing our child, there is no way to predict the outcome, so we have no idea what to expect. I lived in fear of that unknown future for months.