Roller Coaster

Warning: No one should have to board this ride. If one does board, it's good to know the Operator.

I hate roller coasters. I rode one when I was a little girl - "Fire in the Hole" was the name and it was at Silver Dollar City in Branson, MO. I was terrified and kept my eyes shut the whole time. Throughout my high school years, I would go with my friends to theme parks... & I would sit on the bench at the end of the ride & wait for them to finish. I have taken a lot of little cat naps on lots of benches at Six Flags Over Texas. When I was teaching high school, I chaperoned a field trip to Six Flags. At the wise old age of probably 25, I let my dear high school students talk me into a roller coaster. I rode it with them. Then I rode a scarier one with them. I think I did about 3-4 that day. I was terrified but I survived. I'm pretty sure they weren't impressed. I haven't ridden one since.

Last week (or was it 3 years ago really with Will?) I got on another roller coaster. I admit, however, that this one was not by choice. No one asked my permission if I would like to do this. I have been asked by several doctors if I would like to get off the roller coaster. The only way off is via "pregnancy termination." (I think by law they must ask us this. They are very compassionate doctors but must ask. I tell each of them that we love this baby just as they are and we take what we get.) Though no one asked us if we wanted on, we are most certainly choosing to stay on the roller coaster. We continue to say no to abortion. I believe in life and I believe in the Creator of life. It is not my call on how long life lasts. This doesn't make us brave. We are terrified. We are exhausted and overwhelmed. But we believe in the value of life and the One who creates it. Abortion is not an option for us.

Here is what my roller coaster has looked like in the last 10 days. Hang on for dear life!
Monday (April 5): two hour ultrasound reveals complications with baby. Nothing appears to be internal so that is good and relieving. External things appear to be vastly different from what we are used to with Will but nothing that can't be dealt with. One word is used that terrifies me - trisomy 18. Trisomy 18 = fatal. Go home. Call family in tears. No time to cry or think - need to pack for a big trip to Boston. Want to protect Will from our stress. OB calls me and reassures me that he doesn't think it could be Trisomy 18 - not enough indicators. Begin to relax. It's not fatal. Breathe. The roller coaster is steady near the top.
Fly to Boston & find myself distracted from the roller coaster by the sights. No time to think and worry as we are playing tourists and having a blast. Breathing. Confident.
Friday (April 9) - Spend ten hours with doctors. See too many doctors to count. See doctors about son, Will, and learn he needs a tonsillectomy & we need to make a decision about an elective surgery soon. Hear good news on his progress. Relief.
Have fetal ultrasound, fetal echochardiograms, fetal mri. Exhausted. Waiting for results while busy with Will in his appointments. Distracted. (Juggling parenthood of two children is exhausting!)

Go back to meet with fetal care team. Sit in a conference room. There's Kleenex on the table. Someone else offers to take notes for me. I find myself going to the bathroom frequently - it's an escape. Learn that nothing is as we expected. There are internal issues. The baby has some potential organ issues. Fear. It's nothing like Will's syndrome. It's baffling how both of our children could have such rare, unrelated issues. The roller coaster begins to plummet. We are reassured that it seems the baby will live but there are some very serious issues. The baby needs surgery at birth. The baby needs to be hospitalized for awhile. The roller coaster begins to climb again. Surgery and hospitalization mean life. It also means overwhelm. It means expenses and time away from family and friends and "normal." How do I manage Will and play mommy to him and mommy to this baby? I go from wondering how I manage feeding schedules and nap schedules of two children, how to keep Will busy while quickly nursing a baby a few times a day to how in the world do I manage two children who need different therapies and different doctors? How do I take care of Will and play with him when I have a baby who needs mommy while they are in the hospital for weeks on end? The roller coaster is on a series of quick ups and downs. Up...Down...Up...Down

Fly home. While Will is sleeping, make list with spouse of needs. Need to find an apartment in Dallas near hospital that we can live in for a few months around the birth. Need to find people to take care of animals and water plants at home. Need to figure out childcare while I am in so many prenatal appointments. Need to find a Dallas based photographer to be at the birth to take family portraits just in case the baby doesn't survive. So much I need to get done. Will I every find time to do life with a medically fragile child? Need to talk to Will. Need. Need. Need. Need rest.

The roller coaster just goes on and on and on.

Sunday (April 11) -Finally home. Husband takes a Sunday nap while I go to the grocery store. People there aren't on the roller coaster. They have absolutely no idea what is going on in my head. Their eyes don't look swollen at all. This feels so routine, so mundane, so normal. Maybe the doctor stuff isn't really reality. The roller coaster levels off.
Sunday night. R gets sick. Will gets sick. I am not sleeping well anyway and spend much of the night awake taking care of Will. He is still sick - 3 days later. I'm exhausted and yet full of nervous energy.

Monday morning (April 12)- Go to OB. Fill him in on Boston findings. Get a test run. Have the hardest discussion of my life up until that point. He informs me very compassionately that we need to consider our plans should the baby not make it to term or die early. He makes some excellent points we need to consider. This is surreal. Am I having this conversation? Nothing is as clear-cut as I once thought in my life. There's a student doctor in the room. She sees a different side to obstetrics. She probably thinks I'm insane. Leave his office and go to friend's house. Don't want Will to see me crying this hard. Go to friend's house and cry together. Will my baby survive and how am I to survive this? I so need my friends right now. Roller coaster hits rock bottom.

Monday afternoon. Roller coaster begins climb upward. It's hard to keep Pollyanna down. Receive call from Boston genetic counselor. She is very reassuring that they don't see anything lethal in the baby. Can't make guarantees but are feeling confident. Roller coaster soars. So tired of doctors and worry and being stuck at home with sick husband and sick baby. Go outside at 9pm and pace our street. Fresh air does wonders for my soul. Neighbors probably think I'm losing it. I wouldn't put up a fight if someone agreed to put me in an asylum. It sounds restful.

Begin remembering the miracle Will is. Think about how miracles come in different ways than I expect. Think about scriptures that tell me God is knitting my baby. He knows outcomes I can't imagine or fathom. He is God. He is God. God is God - regardless of my circumstances. Still soaring and feeling confident. Knowing there will be blessings I can't comprehend - even if the way to get there is my worst nightmare. He is still God.

Tuesday comes (April 13)- Can't sleep well so wake up and start laundry from trip. It's still not done. Have a few glasses of juice quickly and eat cereal despite lack of appetite. Lay down on couch and urge baby to move for Mommy. Beg. Get so discouraged at lack of movement that I wake up Will to cuddle with me. Don't know if I need to beg baby for movement or remind them that I love them just the way they are and that's it's okay if they are too sick to move for Mommy. Spend hour with Will's pediatrician. He hugs me several times. He has already heard. We talk about treatments. He gives some reassurance. He tells me I'm strong. I'm not. I'm not at all. I'm a wreck but what else can I do. What other option do I have but to take the next step? I just keep moving. We talk about Will. Tonsils are rated on scale of 1-4. 4= need tonsillectomy now. Will is 3+. Am I really needing to think about putting him through surgery right now?!? Do we need to go to Dallas? Am overwhelmed again. The roller coaster is teetering. Will has a double ear infection. I had told him on our way there that they would not look in his ears - just his mouth. Will reminds me no less than 5 times that I said that and yet they looked in his ears anyway. I apologize numerous times. He forgives me. Finally, we have a talk about what forgiveness means and letting it go. Mommy could really use some grace from everyone right now.

Drop Will off at his grandmother's house. Get a coke in a desperate effort to get baby moving for ultrasound. Go to perinatologist's office (Dr. B). He is fantastic. We trust him and respect him as do our doctors in Dallas. We used him with Will and it is good to see him again - I only wish the circumstances were slightly different. Meet with genetic counselor. Love her and trust her. She is very compassionate with me. Discuss Will's birth and progress. Have good excuse to brag. Roller coaster is climbing.
Go to ultrasound. Am doing well. Am confident they won't possibly find anything new since I just had the ultrasounds and MRI in Boston 4 days previous. Am so confident that I urged R to stay at work - I can do this alone. Wrong. Of course. Doctor finds more issues. He pokes some very valid holes in Boston's theories. He doesn't know how everything links together but he is determined to figure it out. We head to consultation room along with genetic counselor. She takes notes and puts an arm around me as we discuss our precious little baby. So many things look good. So very many things are highly concerning. So much is unclear. The roller coaster begins to plummet.

I ask him if he believes our baby can survive. He asks if I want him to be honest. Trembling, I say "yes." He responds that he sees some critical things we need to address and he is not fully confident the baby can survive. I am in tears. I am shaking and sobbing. He offers some excellent advice on how to enjoy the pregnancy and the baby while I have him or her. Am I really having this discussion? We discuss further testing. We talk about the risks of certain tests and the benefits to the baby from knowing more answers available only through those tests. Am I really needing to make these kinds of decisions? Why are things not cut and dry? I am 29 years old. Am I capable of this? The roller coaster is heading off track so it seems.

When I was pregnant with Will and we were in the diagnosis phase, I vividly remember my conversations with our doctors. Frequently, I asked Dr. B. - our same perinatologist for this baby - if my baby (Will) could survive. He was always confident that he could. I've seen Dr. B. when he is confident. I've seen him when he is dealing with neurotic me and some statistic I've seen and he reassures me that though that statistic is valid - he sees no evidence of it in my baby.
I am not hearing that confidence from Dr. B. on Tuesday. He is honest with me as he was with Will. But the answers are so different. He can't reassure me. There is too much unknown going on in the baby in too many organs.
To simplify for my pregnant, overwhelmed mommy brain: our baby is very, very sick. We don't know why. Either Boston missed a few things on Friday (hard to believe- very thorough incredible team of doctors - top ranked maternal-fetal medicine center in nation) or things are progressing in the baby very, very quickly.
4 hours later, am in car. Driving and crying and talking to R. Come home exhausted. Talk on front porch to a friend who brings dinner over. So thankful she ignored me when I told her we didn't need dinner. I never imagined our "simple" appointments would consume 7 hours of my day.
No idea what the roller coaster is doing. Need to make some decisions as to tests. Talk to a Christian doctor (pediatrician) who is a friend of the family and who I've known my whole life and trust. He urges me to do the tests - benefits outweigh risks. Basically, it boils down to this:
if we have the right information, we know how to treat the baby. If the baby has something terminal, we don't waste precious moments at birth with sending the baby to surgery for something that is terminal. I cuddle and sing and love the moments I get. If the baby has the potential for survival, then information helps us know exactly what to treat, how to treat it, and in what order (ie: heart surgery? in utero or at birth? Bowel surgery? other issues?) If we have information, we can have a precise plan in place to save a life. We won't waste precious moments deciding or running tests at birth. Are we really needing to make these sorts of decisions? This is not how I imagined parenting number two would be. This is not how my pregnancy books describe pregnancy. I want to crave ice cream and decide on a flavor. I want to decide on paint shades. Instead I can hardly eat and I think I've only gained 4-6 lbs at 20 weeks pregnant. I am forcing myself to eat - it's one of the only ways I can care for this precious baby. The roller coaster begins to feel steady. I have a whole day ahead of me without a single doctor's visit. I need to give Will some attention. He is picking up on our stress. I plan some Mommy dates for Wednesday. I'm looking forward to it.

Wednesday (April 14)- I don't sleep well. We have to run some errands this morning and get milkshakes for breakfast. Why not? The roller coaster is steady. Don't know if it is steadily going down or up or just resting but it's steady. I think.
Make 2 ENT consultations for Will for Thursday morning. He will need his tonsillectomy sooner rather than later I believe. Feel like a medical coordinator. Finally return some calls for some house projects and feel like a general contractor. Fail to return (or even complete) my radio ratings packets. Had been so excited to complete them and make $60. Forgot to do so. Feel like a failure. Listen to hymns. Catch myself wondering what hymns I would play at the baby's service. How can I think like this? I am fighting with every ounce of my being for life and at the same time trying to enjoy the moments I have. My heart is in some sort of bizarre balancing act. Hire a precious babysitter to play with Will. I take a much needed escape from the house that doesn't involve a doctor. I sit and have a pedicure while reading People Magazine. He needs fresh energy - someone to focus on him and play pirates who isn't in tears or having to stop and answer the phone to talk to a doctor. He makes her walk the plank. He begs me not to go and then when I return, he tells me to go in another room. Feeling like a failure for all of my children. Can't figure out how to be the Mommy everyone needs. Think Will is well. Am wrong. Played a new game with Will this afternoon. We gave the baby a playing card and Will played for the baby. (Will won.) I can't help my imagination from wondering. Will I ever play games with both my children? I somehow managed to enjoy the game and treasure the moment. It may be the only game playing I get with this sweet babe.

Finally have time to talk to R and make some decisions - depending on what results say from tests which we should receive tomorrow. Feeling at peace - is that possible? It certainly is the "peace which surpasses all understanding." It is not a peace which means the roller coaster is over. It's not.

We get ready for bed and as I lay down, I finally feel some movement. Whereas the baby was very active at 14 weeks-16 weeks, things have slowed down considerably. The baby has a very limited range of motion at this point, we believe. I hope to feel movement every 3-4 days. Last night was day 4. I threw my book down & yelled for R. He has only felt the baby once. We are both painfully aware that we don't know how much movement we will get to feel with this baby. He ran in and tried to feel but could not. It was very subtle but my baby was moving. I am thankful.

Don't know how to pray or how to ask others to pray. Am praying and begging God for life and miracles - but I know from life with Will that miracles come in many forms - often as we least expect. I am confident He is knitting together this baby in my womb. Though the baby is sick, He has not turned His back. Will and I sang "Jesus Loves Me" to the baby. Jesus does love my baby. His love is not expressed or measured by one's health. His love is beyond my wildest imagination. His method of loving us may remain a mystery. He is God. He is sovereign. He is creating this life. He knows the number of days this baby has - whether millions or one.

Please pray for us as we continue to make very difficult decisions one at a time. We should get some answers tomorrow. Then we need to determine our next step. I may be in the hospital on Friday. Depending on certain test results, there may be a very serious drug I can take to help stop the baby from becoming sicker (if in fact, the baby is sick - that remains to be confirmed.) However, there are some very serious side effects to me and my kidneys related to that drug. We are waiting to hear back from genetic counselor regarding those.

Please pray for miracles. Pray for wisdom and discernment and clear cut answers - both for us and our doctors. Pray for our baby - that he or she would feel loved and secure and wanted. That their tiny body could fight any further sickness. That they could continue such good growth. That they would know our love.

Please pray for our hearts as we teeter without clear answers and a clear path to take.
We remain so humbled that you would invest in the lives of our children with your prayers. You bless us and our babies.

(By the way, I think we'll open the envelope soon. It's actually sitting right here in front of me - poking out from under mounds of paperwork, MRI images, notes, and ultrasound images. I am feeling very strongly that this baby needs a name and I have an incredible urge to buy a pink or blue gown that fits a central IV line and a pink or blue blanket to send them to surgery with. And I desperately want to monogram everything. I am obsessed with this idea that their name or monogram is on everything while they are hospitalized. We hate to think of not being surprised but right now - it seems the surprises are overwhelming us and the baby needs to go into surgeries with a name. We are trying to wait for a day to open it that doesn't feel so heavy.)