Sunday, March 29, 2009

Our Plan

I don't know if I posted this or not, and I don't think that I did, but our plan is to periodically blog during labor. Autumn, through the gracious gift of her grandpa, has Internet access on her cell phone, and we just checked to see if it would work. It did, and Autumn has offered to help. (I'm sure Rani will, too.) So, if you've been following our story, this might be the next best thing to sitting in a waiting room!

Just a reminder, my due date is April 17 (or is it the 21st? We've been given both numbers.). Sometimes I wake up at night and wonder Is tonight the night? That's the exciting thing that this pregnancy has not changed about being pregnant. We never know.

While I am a little scared, I have to say that I have this overwhelming sense of calm. I don't know why. I don't know where it comes from. But I am thankful that it surrounds me. It has to be good for Lily.

Wednesday, March 25, 2009

More pictures and the birthplan

Grumpy face!
video



video

We've got more, but I'll stop for now. I just can't help but continue to feel good about that experience. I think it's something Dave and I both needed.

Below is a copy of our birthplan. Please, feel free to use it. We put a lot of time and effort into creating it, so we'd love to be able to save you some time. Our process was quite methodical, which took us out of much of the emotional state, so it wasn't as bad as I thought it would be. Still, it wasn't easy.

Birth Plan for Lily Grace

Our Goals are that:
1. Lily be born alive

Vaginal Delivery

Jill wishes to have a vaginal birth and would like an epidural for pain but no other sedatives because she wants to be fully alert during and after Lily’s birth. If warranted, please supply Jill with oxygen to help Lily’s oxygen supply.

Should Jill need a cesarean section to keep her safe, (because of breach position), we request that any medication used allow her to be as coherent as possible.

Fetal Monitoring

We ask that fetal monitoring be performed throughout labor and delivery with the volume off, but with the option to turn it on. We ask that the nursing staff monitor Lily’s vitals and let us know if she begins showing signs of distress and having decelerations.

2. Lily’s loved ones get a chance to meet her

We have decided that our daughters, Rani and Autumn, may be present during the delivery if they wish. We would like all other family to wait in the waiting room until they are requested. We request that no one enter the room without first understanding our situation. Then only those necessary or requested should be allowed in the room. (No students, etc.)

We are requesting that your chaplain, Susan G., update our family for us on Lily’s condition. If she’s unavailable, please have a nurse or social worker do this for us.

We ask that our family and close friends be allowed to visit when we are ready for visitors. Please do not make visiting hours an issue, as this may be the only chance the family will get to meet her.We will also have our minister on call to perform a baptism if Lily is thriving after a few hours.

3. Lily be given only comfort care

Lily’s Birth

We would like the doctor to tell us the outcome of Lily’s birth directly, but with compassion. If Lily has a heartbeat, we would like Dave to have the option of cutting the umbilical cord if he chooses.

Dr. B (or one of his associates) will be present for the delivery and will consult with us regarding all decisions relating to Lily’s needs. We have spoken with him regarding Lily's condition and our perspective, and he will help us make decisions on treatment for her condition.

Procedures

We ask that Lily be placed on Jill’s stomach/chest after all necessary procedures (standard suctioning, rubbing, vigorous drying) have been performed. We request that all unnecessary procedures be delayed (weighing, measuring, footprints, eye ointment, vitamin K, etc.) for a later time. We request that Lily be warmed up using warm blankets and skin-to-skin contact (no incubator). We desire that one of us hold her, if possible, at all times.

If Lily is born with a viable heart rate and respiration, we request comfort care only. We do not wish for heroic measures (such as CPR or intubations) that will only delay her death. If the measure has the ability to allow her to thrive, we support the action.

If Lily is born with a heart rate and no respiratory effort, we would like staff to attempt PPV/ambu bag to start respirations. If Lily does not respond within a few minutes we would like to stop medical intervention.

If her heart is not beating at birth, we do not wish any attempts at CPR.

We would like Dave to accompany Lily during any procedures that must be done elsewhere.

4. Lily suffer as little as possible

Pain Medication

Please consult either Dave or Jill before administering pain medication to make Lily more comfortable. If it is to be given, we wish for it to be in the least painful and intrusive way possible. We would like Lily to be given free-flowing oxygen, if necessary.

Feeding

Jill would like to try to breastfeed Lily. If she won’t or can’t breastfeed, Jill would like to express breast milk, but we are open to suggestions of other feeding methods (including a feeding tube), which may be easier and more effective for our daughter.

5. We get to spend as much time as possible with Lily

Bathing/Dressing

We would like to have the option to give Lily her first bath and dress her.

Rooming In/NICU

We desire Lily stay in the room with us and not be in the NICU, unless she is thriving. If Lily needs to leave our room, Dave should be holding and accompanying her throughout the hospital.

6. We make and take home as many memories as possible

Photographs

We have contacted an organization called, “Now I Lay Me Down To Sleep.” They will be coming in to take memory photos of our family. We request that we are informed when they arrive, and that they are allowed to work unimpeded.

Keepsakes

To help us celebrate and remember this special time, we have thought about keepsakes and other things we would like to do. Here is a list; if there are other items you think we might want, we would be grateful for those suggestions:
*crib cards *hats
*blankets *lock of hair (if possible)
*hand & foot prints *bracelets
*cord clamp *lots of pictures
*molds of hands & feet (we have kits with us)
*videotaping*hospital ID bracelets

We wish for your patience and respect should we want to change this birthplan during or after the delivery.

We appreciate your understanding and your help and support and your expressions of grief, be it through tears or humor. Please do not hesitate to cry or be sad in front of us if that is how you feel.

In the event that Lily is stillborn or suffers an early death:

If Lily is stillborn, we want her to stay with us for as long as we feel necessary. We ask that you give us privacy to grieve, without abandoning us. Please notify staff members as appropriate. Please encourage us to do whatever feels right. We would also like the option to bathe and dress her, as we feel ready to do so, as a family. Also, please allow specific family members or friends to come in as we request. Depending on the circumstances, we request Lily stay with us until the funeral home arrives.

If it is her time to go, we wish for Lily’s passing to be as peaceful as possible


Thank you for acknowledging our birthplan.


Dave and Jill

Tuesday, March 24, 2009

Forget the pictures. We have video!

Leave it to me to forget the camera when going for our last ultrasound, but Dave saved the day with his high-tech :) phone! I wanted to post at least one more video, but the computer was too slow. I'll try another one tomorrow.

Look at those cheeks!
video

Monday, March 23, 2009

Still another ultrasound

The last ultrasound. I have to admit that I was a little nervous about this one. Lily moves a lot at night when she's squished over to my right side, but during the day, she's not as active. I never know until I feel the next kick that she's still just that--alive and kicking. There was this growing concern: will this ultrasound be the last time we see her alive?

It must have been the ultrasound, but I left that doctor's office with the best feeling I've ever had after leaving the doctor's office. Where do I start? How about the cute stuff? Lily was moving all over the place! The sonographer kept saying how squiggly she was. We got to see her yawn and open her mouth and stick her tongue out. Lily usually seems quite shy. When her knee or foot or elbow is poking out, and you touch it, she quickly draws it back in. But I don't know. With that little tongue sticking out, maybe she has us fooled!

Apparently, she's going to be a little health nut. We saw moves that only the most advanced yoga instructors could pull off.

And attitude! We got some nice 3D/4D views and saw one grumpy face after another. And she seemed to open her eyes.

Now, the physical. Not much has changed, although both the sonographer and the doctor feel as if they saw some presence of the corpus collosum, but they expressed that they aren't the experts in this matter. The sonographer also said that Lily's cerebellum didn't strike her as abnormal, but her program couldn't take measurements like the high-risk doctor's program could. They are still thinking Lily has a pelvic kidney, but her other kidney is still functioning. And we saw one hand open and fingers wave, so maybe one hand isn't clenched.

Lily weighs about 4 pounds 6 ounces right now. She's a little behind in size still, especially in her abdomen. We're hoping she'll go full-term and that this won't matter too much. Her heart was strong. Her heartrate was a little relaxed at 126, but she was pretty chill at the beginning. Oh, and speaking of the beginning. . . she was head down. By the time the doctor got in to see, she had moved around so much, that she was breech! Again, we're hoping that she'll worm her way back around in the next few weeks. We really don't want to have a c-section.

It was so awesome to see her being such a wiggle worm! The funny thing is, though, that I didn't feel much of it. I still have elevated levels of amniotic fluid, so that could be the case. Plus, the sonographer said that she wasn't really kicking back, just squirming. It's just so refreshing!

The doctor was pleased with our birthplan, and he even said he'd like to share it with others. Perhaps I'll post that soon in hopes that it may help others. It was an arduous process, even though we had several examples from other mothers and the trisomy 18 website.

I don't say this in an unrealistic way, and I've told Dave this before, but I can't help but feel that everything's going to be ok. I don't mean that Lily is going to be free of this condition. Maybe I mean that we'll get through this. Really, I don't know what "ok" means. Maybe it's just an overwhelmingly good feeling giving me a false sense of hope. But I have felt this way before.

Thursday, March 19, 2009

Story

When I first began blogging, I had a few emails from people I knew and those I didn't who wrote to tell me that they had read my blog. Some of those people were mothers who have either had a baby with T-18 or were pregnant with a baby who has T-18. I still get messages like that, but not as much. I wonder sometimes if those same people are still following.

Not that it matters. Whether I have zero readers or 100,000 readers, I will still write. I think Sue Monk Kidd explains it beautifully in her book Firstlight ("The Crucible of Story" chapter).

"When we share our inner stories, we allow others to enter our lives and partake of our deepest truths. We discover that we share the same joys and tragedies, the same ambiguities and struggles. In the end we are all one story."

I have allowed all of my readers into my own "inner story." When I introduce myself to a "new" T-18 mother, I always encourage her to read others' stories and, if possible, to begin her own. When I discovered that I share the "same joys and tragedies," an extra layer of comfort was added to soften my worries. There's something to say about not being alone.

But sharing my story has done more than just put me in touch with other T-18 mothers. Kidd again knows exactly how it is for me: "Telling our story puts us in an inner room with our suffering and allows us to dialogue with it. We begin to see our difficulty in a new context and thereby find the comfort and courage to live it." Maybe that's why I've heard so many others say how strong I am. In bearing my soul through my fingers, I've faced this suffering head on. I've looked it straight in the eye and taken it for what it's worth. It's been quite cathartic.

So if you are a T-18 mother or father, or if you suffer through some other difficulty, perhaps by telling your own story, you will "find the comfort and courage to live it." It doesn't have to be by blogging, but I've found it's a great way to keep a lot of people informed.

Wednesday, March 18, 2009

Numb

There's numb, and then there's numb. It's amazing, the difference between the two. I've been walking around, numb, for a few months now. I think my brain/body had just said, enough! You can't sanely make us go through this much pain. Hence, the numbness. And it's so hard to explain. It's like every nerve ending in my body has just shut down. I'm here, but that's about it.

So much has gone on in the past few days that I've become numb. I never really knew that even existed, but I have this going-into-myself feeling, like a turtle in it's shell. I think it all started the other day when I read two mother's postings about their little girls' births. . .and deaths. . .on the T-18 website. I'd not read these type of announcements for a while. I was at work, so I had to hold in a greatly-needed cry. But more than that, there was this realization that I may be one of those mothers posting one of those announcements. . .soon. I mean, I have 4 weeks/1 day left. (Autumn was 4 weeks early.)

My world started crumbling.

Then, there's the birth plan. Dave and I worked on it over the weekend and finalized it last night. I'm embarrassed to say that it's 3 pages long. I can't help but thinking, those poor nurses. I hope they like to read. But it's heartbreaking that a birth plan is even necessary. We've put our wishes in the event Lily's born breathing; not breathing, but with a heartbeat; stillborn; thriving; health diminishing. Should there even have to be so many outcomes?

Break off another piece.

Plus, I'm having trouble sleeping. I'm not uncomfortable. I think it's just the stress of all of this is finally wearing on me. I'm excited, but fearful at the same time. Can those two emotions even co-exist within a person for the same situation?

I'm beginning to think Humpty Dumpty here. Is there any chance I will be put back together again?

Luckily, I have my distractions, but when all is quiet in the house, and my distractions are asleep, there is nothing left but numb.

Thursday, March 12, 2009

Instinct

A mother's instinct is hard to tame, but fear has a way of controlling it. There is a part of me that needs to run out and buy pretty little girly clothes and diapers and a dual stroller. Oh, the list goes on. But fear keeps me from doing it. How can I possibly buy something I may have to take back? Still, on the weekends, I want to go shop for baby things. I stop myself every time.

It is that same instinct that tells me I need to pack a hospital bag, but I continue putting it off. The memory of packing the bag for Gabriel's birth is fresh in my mind. So is that air of excitement. What type of music do we want him to hear as he enters our world? What can I take to occupy my time? What clothes do I want to wear? What clothes do I want for Gabriel? I turned these questions over in my mind weeks, if not months, before he was born.

I try to think of these questions for Lily, but the excitement in preparing that bag just isn't there. I don't usually have a defeatist attitude, but the question "Why bother?" sometimes enters my mind. I really know better.

This pregnancy has not been filled with reading "what to expect when you're expecting" type books, taking pictures of my growing belly, planning motifs, so I really have no recollection of what I should put in that bag. I just remember the feeling.

But here's what I know: The hopes and dreams that accompany the normal pregnancy will not be stuffed amidst the clothing, the music, and the puzzle books. This time, there will be different hopes--a chance of meeting my daughter, for her to feel our love, to leave the hospital with a baby in my arms. Oh, the list goes on.

Tuesday, March 10, 2009

Ready?

Another doctor's appointment today. This one wasn't so bad, but maybe that's because Dave was with me. He's such a beautiful source of strength for me. I didn't even feel out of place or choke up. Nothing new. Lily's heartbeat started off at 129 but ended strong at 143. I'm measuring 33 and something weeks (but I'm 34 1/2 weeks). We talked to the doctor more about a c-section and induction, but we come back to the decision we've made that Lily will dictate to us how her delivery is going to go.

I walk the tightrope on the induction decision, balancing between the two possibilities. For one, if we deliver early, Lily might not be as developed as possible, so she might not be ready. On the other hand--and I know to a point, she's safe inside me--, there comes a time where some of these babies' lives cannot be sustained inside the mother toward the end of the pregnancy. It's not easy to sit here and confidently say that we're listening to Lily. It's more like we're listening to Lily? with the question mark dangling at the end, bearing our hope that we are making the right decision. But there is a part of me that knows this is the right thing for us to do.

I think it has something to do with the Christmas Eve before my nana died. We were all at her house, having our annual Christmas Eve get-together. (My nana had emphysema, so she was on oxygen. There were times when she struggled to breath.) That night, she had a moment when she struggled. She looked up at me, and I'll never forget the look in her eyes. They pleaded with me, but not for help. For understanding. I knew that this was going to be her last Christmas with us because of that look. I believe she was telling me that she was tired. That she was ready to go Home. I cried as I drove home. I was not ready to let go, but it wasn't up to me.

Perhaps, remembering that look, I have learned to respect that there is a time when one needs to go Home. No matter what we know about Lily, no matter how much preparation we do, I'll never be ready to let go, but again, that is not up to me. The day draws nearer. Time will soon tell exactly how strong I am.

Wednesday, March 4, 2009

Labor?

Last night, around 2 am, I awoke from a painful nightmare. Literally. My back was hurting. It took me a few minutes to realize that the pain would come and then go and then come back again. Am I in labor? I quietly laid in bed and waited. . .and panicked because I realized how unprepared we are. We haven't even touched the birth plan. Would I be able to make sane decisions while my body prepared for Lily's birth? I don't even have a bag packed for the hospital yet. What would we take for Lily?
But more than that. . .Rani has the flu. Would they allow her to be in the room with us? I couldn't deny Lily's sister her need to be there.
What about work? I haven't finalized the paperwork for my maternity leave. Book fair begins tomorrow. I have an intern who is relying on my presence. She needs me at work for three more weeks.
What about baptism and the burial ceremony? We've mentioned in passing both of those with our preacher, but no specifics.
As unprepared as we are for Lily's birth, it doesn't come close to how unprepared I felt thinking that if she were born last night, she would not have made it. I knew that without a doubt. I wasn't ready for that. Can't say I'll ever be ready for that. Lily was very active during all of this, and every time she'd move, I would wonder Is this the last time I'm going to feel this? Needless to say, I held on to each precious squirm and kick.
I'm not saying God answered my prayers--I don't think of those random thoughts I had as prayers, really--, but in between thinking about all the ways we needed to be prepared, I kept saying This can't be happening. It's not the right time. Please don't let this happen. I'm so thankful that it didn't.
Around 3 I decided to time the "contractions." That's when they quit. I guess it wasn't the right time after all.

Sunday, March 1, 2009

Standing outside the fire

There was a time when Dave and I were dating, and he had decided to go to graduate school. I was heartbroken because that meant he'd be 2 1/2 hours away. (At the time, this was the biggest tragedy in my life.)

We were at a campground with his parents, and he and I were sitting outside by the campfire. We were talking about him going off to grad school and how I hurt to think of him going, but that I would be ok. I related it all to standing outside the fire. Here's how I think of it, that dealing with a tragedy, and this is the way I think of it with Lily.

I have no idea what "tomorrow" is going to be like, but when it comes to "tragedies," I dread it. I think the worst of any situation. I think I do it to prepare myself for the hardships that are bound to accompany those tragedies.

Where I stand is here, on this side of the fire (imagine a campfire). I know I'm going to have to walk through those hot coals, and I dread it. It's going to burn and hurt and scar. And even though I don't know when the "coals" will end, I know that they don't last forever. I can make it to the other side where there is relief from the burn and the hurt that I will have to pass through. I may have scars, but they will become that gentle reminder of what I've been able to overcome. They will strengthen my "sole" for the next crossing, because we're never guaranteed in life that the coals are a one-time thing, but they will never be hardened to the point where I've lost feeling.

Still, I dread walking through the coals and not knowing exactly how badly they are going to hurt and when they are going to end. I know the other stuff. But I concentrate on the coals. But I know the other stuff, which reminds me that I can make it through all of this. I just don't know when that will be. So I dread the tragedies before they even get here.