Announcing the News!

Will delivered some pink flowers out of our yard to his Honey & G-Dad to announce the news of baby Ellie


My mom knows how important a "creative" announcement is too me - from announcing my pregnancices to announcing the gender at the birth. She also knows I have grieved not being able to do delivery like I imagined- with Will running down the halls to tell our waiting family whether he had a brother or sister.
Thankfully, when I was incapable of being creative, she went to the store, bought blue & pink balloons, & told me how I could announce it to her & my dad using them. I appreciated her thoughtfulness- I am thankful she helped me make it a celebration!

Will rang the doorbell & when Lovie came out, he was holding both balloons. I had managed to tie the pink one to a weight so he released the blue one & she knew right away! (My dad wasn't here but we filmed it & sent it to him.)

We also told our siblings over the weekend but our computer crashed & I'm not sure where those pictures are!

Great News for Baby Ellie!!!

I just heard from the genetic counselor and some of our results are in from Friday's test:
Precious Ellie Grace does not have:
trisomy 13 (fatal)
trisomy 18 (fatal)
trisomy 21 (Down Syndrome - not fatal)

Also, it has confirmed that she is most definitely a girl!!!

I am so thankful to have ruled out trisomy 18 especially - this is one that had appeared to be a strong possibility!

We don't know yet on the other 20 chromosomes. We also don't know yet about disesases- these results won't come in for about 4-5 business days. The counselor celebrated with me but also reminded me that we are not out of the woods for fatal or quality of life issues. There are still some very serious possibilities.

For today, though, Ellie Grace & I are celebrating. I am feeling more confident that I can believe I will hold her in my arms - at least for awhile. I am so thankful for some good news today.
We still beg you for your prayers for her life- as I said, we are not "out of the woods" yet. But we are praising God that trisomies 13 & 18 are out of our woods!

Will Has a Big Announcement!

Surprise!

It's a ...

G I R L!!!

Originally, we thought we would let Will be the first to meet the new baby brother or sister and then announce the gender to our waiting family. As our circumstances have so drastically changed recently, we felt that perhaps we should open the envelope now so that we could have a specific name to pray for. I also have felt strongly led to shop for this precious child - to have their name monogrammed on sweet, tiny clothes that are ready to go. I don't want them to go to surgery without a blanket and clothes. I need a name to give their life significance now. If I don't get very long to hold this child, I want them dressed beautifully. I don't want to waste any time.

So, we opened the envelope. R & I opened it in bed yesterday morning.

Then, we told Will and we let him tell our family.

Both my local ob's office & our genetic counselor in Boston made us sealed envelopes with the gender written inside.

Turns out, they were both correct. We'll get back a chromosome report in the next 8 days or so which will also confirm the news!

The Boston genetic counselor made pink confetti in her envelope. Our local ob's office wrote, "Will was right! It's a girl! Congrats!"
We cried. Tears of joy - I have so many dreams for my Ellie Grace. We cried tears of sorrow too - will she live long enough to know how much she is loved? I love her so much - I can't imagine my life or our family without her.

I'm so glad we can call her by name.

Eleanor Grace

"Ellie"

(Or as Will continues to insist: "Caroline Ellie Ellie Grace")

He also didn't act so surprised yesterday - he's insisted all along it is a girl so he doesn't know what the big deal is!

"Ellie in My Belly" Pictures Coming Soon!

quick update to the roller coaster ride

I heard from our local genetic counselor this afternoon. The first rounds of tests for agressive infections attacking the baby came back negative. The good news is R & I no longer need to make a difficult decision about a drug that would have potentially caused harm to my kidneys but might have stopped the progression of the infection in the baby. The bad news is that we still have no idea what is going on. Our doctor is so great- he is consulting with lots of doctors trying to figure this out. (Again - I seem to complicate the lives of our doctors!) He wants to run another test for some more obscure infections. We will do that tomorrow beginning at 11:30am. We will likely have another ultrasound tomorrow. We may need to do further testing tomorrow. Please pray for our hearts and our precious baby tomorrow. God is God. He is God. He is.
Both of these are posted in my kitchen (I have found with raising Will that keeping scriptures in my kitchen might look cluttered but really helps me when I need them in my face). I reread them this morning and He just reminded me of the truth.
I know that You can do all things; no plan of Yours can be thwarted.... Surely I spoke of things I did not understand, things too wonderful for me to know. - Job 42:2-3
Even when we are too weak to have any faith left, He remains faithful to us and will help us. -2 Tim 2:13
The hard part for me as a Mommy is recognizing that while His plan can not be thwarted - it may not be the same plan my heart so desperately wants. His plan might be to have this baby with Him sooner rather than later. I do know from my experience as Will's mom that His plan is wonderful - I may not see it until I get to Heaven (where hopefully he assigns me to a bed and an angel to rub my feet for 10,000 years & orders me to rest & not cry) - but, ultimately, His plan is too wonderful for my finite mind to grasp.
Thank you for praying.

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.)

Pray for Miracles!

I have been driven many times to my knees by the overwhelming conviction that I had nowhere else to go.

-Abraham Lincoln

We had a good, although very difficult, trip to Boston last week.

The Red Sox game was a blast! (Even though they lost. :( ) Will had a great time at his first MLB baseball game & I can't wait to post the pictures! It may take me awhile to do so, however, I've got a lot on my mind & on my to do list this week. We enjoyed 2 full days of being tourists - it was great & a much needed escape. We had great weather thankfully & really enjoyed the city.

Then it was Friday.

We spent an agonizing 10 hours at Children's Hospital Boston on Friday. Will did great. He spent 3 hours there seeing his various doctors and a therapist. The appointments cut into his naptime and he literally fell asleep in my mom's arms in the lobby while they waited for their taxi to go back to the hotel. (We flew my mom in to take care of him on Friday while we were in baby appointments.) He remained potty trained throughout the trip & I am so proud of him - he has gone in all kinds of strange, new places (airplanes, baseball fields, random hotels and restaurants) & no accidents on our trip at all!!! (Sorry - proud (& relieved) mommy sidenote. :) )

We returned yesterday from our trip to Boston and Children's Hospital Boston. Once again, we are humbly seeking your prayers for each of our children. (Both Will & Reagan have a stomach bug now & I am exhausted - I need these boys well so I can do laundry & feel "normal.")

Will - apparently he is not off the narrow airway list. The Boston doctors feel like he will require a tonsilectomy very soon. We will begin looking into this soon & are not sure at this point if it will need to happen in Dallas due to his narrow airway or not. Apparently, the tonsils are blocking his airway. The doctors were very pleased with his progress overall so that was encouraging. We also have a very difficult decision to be made in the next 6 months or so regarding a possible hand surgery - which we would have done in Boston. Please pray for our wisdom and discernment (& ability to focus on this decision among so many other impending ones in our lives at this time.) Will did excellent through 3 hours of doctors which extended into his nap time. We are so proud of our little guy.

The Baby- During our ultrasound at the Advanced Fetal Care Center, the doctor noticed some heart issues so we ended up having a fetal echochardiogram along with our ultrasound and fetal mri. It was a grueling day. During our final consultation after all of the doctors had met & studied the images to piece together the puzzle, the geneticist commented, "Apparently lightning strikes twice." They are baffled at the fact that our children can each have such rare issues that are completely unrelated. I suppose we have totally defied the odds. I can only cling to the fact that I know the Creator of the lightning and He created each of my children. I am also so humbly aware that I do not understand His ways or His plan.

The baby has 2 main issues (possibly unrelated) & both need prayer:

1. heart & intestines - It appears that the intestines ruptured or twisted at some point during development causing there to be small calcification masses throughout the abdomen of the baby. Normally, these are no big deal (I think.) However, two masses have lodged themselves in the lining of the heart. They are not impeeding blood flow. The structure & functioning ability of the heart is great. However, we will need to continue having fetal echos done throughout the remainder of the pregancy to monitor that they do not grow into the heart & begin to impeed blood flow. Please pray that they disappear and that we do not need any sort of cardiac intervention at birth. We will also need to continue monitoring the intestines to see if they have in fact ruptured and if it occurs again. The Boston doctors feel like the baby will very likely require surgery shortly after birth. The prayer is that they have healed themselves and that the baby will not require surgery or a central IV line & NG tube for feeding.

2. The baby has a tendon/muscle issue (disease possibly - although non-progressive) in the wrists and ankles. It is not related in any way to Will's syndrome. It is not genetic or chromosomal. It occurs in about 1 in 3000 live births.
This has caused the hands and feet to not be functioning correctly due to issues in the tendons at the wrists and ankles. We do not know at this time if the other joints (elbows/knees/hips/shoulders/jaw) are affected as well. The doctors were adamant that this is a condition (or disease) - not a diagnosis. This may require multiple surgeries and will definitely require intensive therapies & a variety of therapies. I thought I knew the "limb difference world" but this is a whole new aspect to it - new therapies I am unfamiliar with, new vocabulary, new set of specialists. I am very, very overwhelmed at this point as to what life will be like for this baby. (And as to what life will be like with two children in separate therapies/separate doctors/ vastly different needs, etc) Some babies with this "condition" are unable to survive past their first birthday as their central nervous system is affected. It is impossible to tell prenatally if our baby's CNS if affected. I am terrified of this prospect & terrified that I can't know what to prepare for.
I met with my ob this morning to do some blood work to rule out an infection causing this and also to consult about the Boston findings. Thankfully, he hasn't fired me yet for complicating his life & practice. He worked very quickly & I go tomorrow at 1pm to meet with the local perinatalogist. However, parts of our conversation today were extremely difficult as we discussed the possibility of the baby not surviving until term. There are so many unknowns at this point and my heart seems to hang in some sort of limbo - I don't know if I should be grieving & preparing to love and enjoy my baby for whatever minutes and days I may get or if I should be preparing for surgeries and therapies and who knows what else. I desperately want to fight for life. I'm terrifed of how to survive otherwise.

Our baby is "medically fragile" in multiple areas. We are overwhelmed and trying to process all of this. God has not yet given me the grace for the future. Sometimes I feel like I just barely have enough for the moment. Today it has literally been moment by moment & I don't always feel enough to get through a moment. We don't expect you to have the "right words" to say to us - your prayers in investing in the lives of our children are what we need. Knowing that you are alongside us brings us great comfort - especially as we prepare to meet this baby and whatever their needs are. We are so thankful for the offers of meals - I know we will need that later on & don't want to use up our meal allowance yet! Most needed right now are your prayers & hugs & shoulders to cry on- I just need to know that our friends are loving us & beside us.

As a final note, we are not telling Will anything at this point. He is very sensitive and observant and has anxiety about doctors. (He was nervous for the baby on Friday as he knew I had to see a doctor and he was afraid the doctor would be checking the baby's ears for infection. Bless his sweet heart.) Anyway, at some point, closer to delivery, we will try to prepare Will for the baby's hospitalization in a very simple manner. For now, we don't want him to worry so we are trying to guard our emotions and words in front of him. I say this to ask you to do the same, please. We want your hugs & you can communicate so much to us simply with a hug or handshake. If Will is with us, please be cautious with words that might lead him to be anxious. Thank you for being sensitive to him.

Thank you for praying for a miracle alongside us and loving us. I don't know how many miracles I get in life- I am so thankful for the "walking miracle" that Will is. I long to know and hold & watch this baby be a miracle as well. I also know from Will's life that a miracle can come in a way I don't expect or plan for.


There are only 2 ways to look at life… one is as though nothing is a miracle & the other is as though everything is.

– Albert Einstein

Prayer Please

We are humbled by your faithfulness in praying for Will and our family over the past three years. We are now asking for your prayers for the babe in my womb.

While in Boston this week:
We will see 6 surgeons & 1 therapist for Will. Please pray for his anxiety and cooperation as well as our wisdom & discernment as we seek to determine a course of action that is best for him.

We will see a perinatoloigst & radiologist along with a geneticist & counselor among other possible doctors as needed for the babe in my womb. I will likely have an ultrasound on Friday morning followed (if necessary) by a fetal mri. I had a fetal mri while pregnant with Will & it was awful. I am experiencing a great deal of anxiety about this - not to mention the possible findings.

We are not sleeping well - it hits me in the middle of the night. Please pray for our emotions & our wisdom with this babe as well.
Thank you!

It's A...

Perhaps because we've always been rule followers & we have inner rebels, we decided to once again, remain surprised!!!

In my purse, however, is a little slip of paper revealing what our gender our babe is in a sealed envelope. We did this with Will & opened it after his birth. It was so fun to see if the doctor was right. We'll see if I can continue to resist the temptation! I ought to hide it from myself!

We had our 19 week ultrasound today. The babe weighs 9 oz & is beautiful. The heartbeat was 149bpm. We are all pretty sure the babe smiled at us!

In our 2 hour ultrasound today, we learned there are some complications with this pregnancy it seems. I will be seeing some perinataolgists & prenatal counselors while we are in Boston later this week. They plan on more ultrasounds & a fetal mri while we are there. When we come home, our ob would like for us to see a specialist here as we determine our delivery options and the best post birth options for this precious babe, once again.

Please pray for our babe - some of the possibilities we found today are terrifying. Please pray for our hearts as we enter this scary world of unknowns once again. Please pray for Will - we are not sharing any information with him yet (mostly because we don't know anything definitive yet) but we may need to prepare him for some things at a later date.

Please pray for wisdom on the part of the doctors and us as we pursue more testing possibly. Thank you.

We continue to claim Psalm 139 for each of our children - they are all fearfully & wonderfully made. We continue to claim Job 42 & Jeremiah 33 for our children & our lives- we can't begin to come close to fathoming His plan but we are confident God remains God.

What Is It???

Recently, at an Asian restaurant, I received this in my fortune cookie...

I'm not saying it means anything. I'm just saying.... ;)

I don't know if I've really had cravings with this baby. At least, not super strong, I must have this item now kind of cravings. I have found, however, that sometimes something sounds pretty good to me-

like yesterday at the grocery store, these little sweet gherkins pickles sounded yummy. They are but only in small doses.

And this Simply Lemonade with Raspberry - Oh my goodness! I bought 2 containers yesterday. LOVE it! It tastes like a Sonic lemonberry slush if you freeze it. Yummy!

So - what am I having?

Here's my observations so far in this pregnancy. I am 18 weeks today.

Mystery BABE in the womb vs WILL

Mystery Babe: craving nothing specific - love above mentioned drink

Will - craved pb, Moose Tracks Ice Cream

Mystery Babe- lost weight - down 4 lbs from where I started

Will: I gained a lot ... a whole lot....

Mystery Babe: can't stomach idea of meat if I see it raw first

Will: I ate everything in sight

Mystery Babe: have vomitted weekly - even as recently as a few days ago!

Will: only vomitted once - at 8 weeks preg

Mystery Babe: gag all the time - it's bizarre - never happened to me in my life!

Mystery Babe: never super tired

Will: exhausted

Mystery Babe: short of breath

Will: Spouse would say I was super forgetful - I don't remember this symptom

Mystery Babe: my spouse might claim I seem extra hormonal & even sometimes aggressive - I don't know what he is talking about...

Will: slept great!

Mystery Babe: hard time sleeping & achy back

Will: good hair - nice volume

Mystery Babe: lots more gray (yikes!) & so limp

Will: bad face breakout- like a teenager!

Mystery Babe: generally clear skin (thank goodness)

I think we've decided not to find out... but would love your opinions!!! Is every pregnancy just different or are there specific symptoms associated with girls vs boys in your experiences?!??!

Either way, we're thrilled & thankful & excited to meet him or her! (Although not too soon - I've got lots of projects to finish & a little boy to train to sleep in a big boy bed!)

"Our Baby"is NOT an Animal

At bedtime tonight, Will & I were rocking & talking and the following conversation occurred about the babe in my womb:
Will: "Mommy, can I pet her?" (he almost always refers to the baby in the feminine)
Me: "Yes, you can after he or she comes out of my tummy?"
Will: "When the baby comes out, I can pet her? Is she an animal?"
Me: "No, she or he is a people like you. Would you like to go with Daddy & I to see Dr. D. & look at the baby in my tummy next week?"
Will: "Yes, I would! But Dr. D is not going to check our baby's ears!" (I love how he often refers to the baby as "our baby!")
Me: "No, Dr. D. is not going to check the baby's ears. You don't like to have your ears checked, do you Will?"
Will: "No. And I will teach the baby to climb in my fort and play baseball. Babies go night-night a lot don't they Mommy?"
Me: "Yes, babies sleep a lot." (Though not for as long as a stretch as I often wished!)
Will: "But when the sun comes up, the baby will wake up and have breakfast like me!"
Me: "Yes but the baby will need milk from Mommy for breakfast."
Will: "Yes they will. But when she is a big boy, she can have a baseball breakfast bar like I do!"

Then, he wanted to pray & he thanked God three times for "our baby!"
Love these conversations! He will be a great big brother!

Quick Update

This is a quick update for 2 reasons...
1. I don't really have much to update. We did have an ultrasound today & the baby measured 3 oz. & was right on target for 14 weeks. We didn't get a clear face shot - but a beautiful profile! ;)
The rib cage looked good so that was very reassuring. God gave us lots of laughter- mostly at ourselves & the bizarre questions we come to an ultrasound with - we aren't the "typical" pregnant couple due to our experiences. My blood pressure continues to be high for me - we think it's due to the stress & tension of ultrasounds for us. The baby was pretty tightly curled up so we didn't get a very clear picture of hands & feet - we'll try again in a month. We're trying to continue to feel peace with a lack of definite answers.
He offered to send us to the specialist but we think we will wait & see what happens in a month.
We did see some kicking & even heard it kick while we listening to the heart (158 bpm.)
We are praying for peace - whatever the results. Frankly, though having another child with limb differences overwhelms me, I feel scared of having hands & feet - perhaps this sounds crazy but I'm pretty wild about Will's hands & feet & I feel we have been abundantly blessed. For instance...
2. I don't have time to update because Will & I are headed to East Texas very early tomorrow morning to WORK on the ABC EXTREME HOME MAKEOVER HOUSE!!!! (Go about 2 posts down to see our connection to the family receiving the home!) We just got the call today that there are spots available for us! Will's tools are packed ( ;) ) & I'm headed to the job site tomorrow!!!! Pictures coming soon!!!!! :) Hopefully, we'll meet Ty! :)
Got to get packing & straighten my house!

Thank you for continuing to pray that God will prepare us to parent this child - however He forms them!

"Normal" for a Day

With an ultrasound looming tomorrow, I keep thinking about this babe I am carrying and about how little I've posted about the "normal" pregnancy stuff. I have no idea what may happen tomorrow & I remember a month ago thinking that God had just given me an ultrasound with no answers- which meant another month of just being a "normal" pregnant mommy. A normal pregnant mommy doesn't see specialists or cry daily in fear for her baby or book delivery rooms 6 hours away or locate specialists to serve her baby after delivery. A normal pregnant mommy doesn't spend doctor's appointments (& the days before them) in fear and prayer. She doesn't wonder if she should inform the random grocery store cashier about the baby's potential issues when they ask a simple question about the due date. She doesn't spend hours online futilely searching for other moms like her.
Instead, she talks about her symptoms and... I'm not exactly sure what else she does. I haven't walked the "normal" road for very long in any of my pregancies.
So, this past month has been a gift & I haven't fully appreciated it. I haven't celebrated this nearly enough!
Since I don't know what looms ahead this week, let me fill you in on my pregnancy (the fun stuff!)
My symptoms -

• not nearly as tired this time as I was with Will... although I have continued to be lazy & have not accomplished tons. This week I've felt like I am nesting - a bit early - lots of cleaning & double laundry & even nearly finished my scrapbook(s)!
• SICK!!! :) I think anyone who has experienced a miscarriage or who knows someone close to them who has gone through the pain and grief of miscarriage knows the celebration of being sick while pregnant! Some people have told me they hope I feel better soon! NOT ME!!! Seriously, I have only been at the toilet a few times (a few more times than I was with Will, however) yet each time, in between .... you know.... I was telling God thankyou.
• Sick - even when I haven't had to go to the toilet, I have spent most evenings being rather nauseous. Yahoo!
• Hormonal - I cry every single time a Procter & Gamble "thank you, Mom" commerical comes on during the Olympics. I cry talking to my friends. I cry cuddling Will. I cry when an American wins a gold medal. I cry when the camera finds their moms and dads. Of course, I've always been a crier so it's hard to really blame this on the hormones.
• Forgetful - Don't ask my husband how many times he has come home to the oven still on & some part of our dinner completely burned- usually the meat.
• Food Aversions - With Will, I ate everything in sight! As soon as I knew I was pregnant, I began packing on the pounds! Gained a lot & throughouly enjoyed my excuse to EAT! This time, I've actually lost a few pounds. Food has just in general not sounded good to me - especially at night. I've had almost no desire to cook (not like me!) and no creativity. Planning our week's menu has been torture as nothing appeals to me. Unfortunately, I live with two people who like meat. Meat has really been my most unappealing food item. I've nearly lost it at the butcher's counter in the store! I'm trying to cook it for people I love but ugh - can't eat but a bite. I've found that using my crock pot in the morning to cook the meat has really helped as by evening I just can't hardly look at raw meat.
• Gag Reflex- did not have this at all with Will and at nearly 14 weeks, it hasn't gone away. It started about 3-4 weeks ago & I can't tell you how many times I've suddenly run to the sink thinking I'm sick. Will coughing & my own coughing really get my gag reflex going. I've never experienced anything like it - bizarre!
• Maternity Clothes- I don't know why I waited so long to re-embrace these. Technically, I can still wear my old jeans (shirts - not really as the belly pouches out beneath them!) But, by the end of the day, buttoning the jeans is not so much comfortable. So, about a week ago, I took out my maternity clothes and fell in love all over again. Why oh why did I wait so long? There is something wonderfully efficient about not needing to zip & button!

That's all I can think of today! My symptoms (with the exception of a lack of exhaustion) have been much stronger this time & I am so thankful. I don't know if it the progesterone supplements I take or a gender difference (;) ) or just a different pregnancy therefore different symptoms issue. But, it's so fun to just think about the normal pregnancy things for a day!

First Pics...

Got a little distracted & forgot to post these last week!

The above pic is from when I was about 6 weeks pregnant. (The baby is at the top.)
This one (above) is the 4d pic of the baby at 10 weeks.
And, here's another one of 10 weeks

(Sorry- horrible quality of photo but precious subject!)

Willisms: the Baby Edition

As soon as we learned we were pregnant (the day of Will's surgery just before Christmas, in fact), we told Will. He was thrilled & has cracked us up ever since with some funny comments. He often talks to my tummy & has even come running with a book to read the baby a story. He also kisses my tummy & sings some of his favorite songs to the baby. If this babe sings "Old MacDonald" at an early age, we'll know why!

Here's a few of our favorite Willisms regarding the baby:

• Will is adamant that it is a baby girl in my tummy. One time, I was finally able to get him to concede that it could be a boy, & he informed me his name should be "George." But, then he went right back to insisting it is a girl. He has named her "Caroline Ellie Ellie Grace." (No idea why he uses two "Ellies" but it's precious.) Fyi - if it is a girl, I think we may name her Ellie Grace. If it's a boy - don't know!!! I'm open to suggestions but I love traditional, English names (and border on having all my kids sound like the English royal family!) I also love names I can shorten for a nickname - ie: William to Will


• At one point, for the first few weeks, he called the baby "Donut." He's never had a donut and at that point in time, we knew he had no naming privlieges. (He still doesn't but at least he uses people names now!)


• Speaking of gender, one day he announced out of nowhere- "boys have p.... (can I write that word on the internet!?!? Think male anatomy correct term!) "Baseball players have p... too. Girls have bottoms." Yep, Will, girls have bottoms. :)


• Yesterday, on the way to his friend's house to spend the morning while I spent my morning in an ultrasound, I informed him that Dr. D was going to look at the baby in my tummy. He said, "Oh, Mommy, is Dr. D going to wear his blue gloves & put the stick in your tummy to look at the baby?" I said yes & informed him that he was done with attending early trimester ultrasounds- he has to wait until the ultrasound is done on top of my tummy! (fyi - he has always stood at my head so he doesn't know the details but wow- how observant!)


• Also, despite the fact that he has lots of his own doctors, Will loves to play pretend dr & almost always pretends he is my doctor - Dr. D! Fortunately, he sticks to checking ears & eyes & hearts! I informed my ob last week that he may have a two year old intern! If Will goes into ob-gyn someday, we'll know where it all began!!!


• "Girls and mommies have babies in their tummies but boys have belly buttons."


• I take supplemental hormones and recently on our way to the pharmacy to pick up a refill, I told Will we needed to go pick up medicine for the baby. Will got a sad face and said, "Oh, baby, are you crying? It's okay, baby. You need to choose happy or go to your room!"

I Do Not Know How I am to Pray for this Child...

There's a Sara Groves song I love entitled, "I Do Not Know How I am to Pray for this Child." I thought of it this morning & it just keeps playing in my head as it sums up exactly how I am feeling.
We've had two ultrasounds with this babe & each time I am a complete and total nervous wreck. Gone are my carefree days of pregnancy (did I ever really have that?) My initial fear is always miscarriage - I miscarried our first baby at 11.5 weeks. That was such a painful experience for us & I have walked through that pain with friends since - it is just one of the most difficult things for a mom to experience. The fear remains with me. So much so, that one day I was so sick and at the toilet (apparently this babe doesn't care for tomatoes or brushetta from Carinos!) that inbetween heaving, I was thanking God as I knew what a good sign nausea is! Unless you or a close friend or sister have experienced a miscarriage, I don't think you can truly "appreciate" the blessing of nausea!
Once the doctor finds a heartbeat, my fears transition to what syndrome they may discover. I was once very naive in that I think I assumed that because I was educated and married and took good care of myself, was in good health, ate all the rights foods and vitamins, etc, the thousands of syndromes out there simply didn't apply to me. I now know otherwise. I also used to not know about a lot of syndromes but now I know of their existence simply because I've met a child with one of them while in a hospital with Will or I've met a parent of a child with some sydnome in an online group or I've stumbled upon it while researching something for Will. It's overwhelming.
This week, the doctor pretty much ruled out 2 syndromes. They weren't particuarly syndromes we had any reason to suspect (no family history, no signs of, etc.) but he could rule them out based on the ultrasound & I took it as a victory - I take good news when I can get it & then I celebrate & throw a party!
He also informed me when I confessed my fear of the world of unknown syndromes that might apply to me that 1) many of those are not detectable prenatally- they present themselves after birth & 2) to go looking for them now would be a fishing expedition... it's just not practical & would increase my anxiety.
And then there are the limb syndromes. These I am okay with, for the most part. Although, if I get to make specific requests- things like no mouth issues & no fear of death the first 6 weeks post birth & ability to smile & even having pincher fingers would make my list. We've talked about someday adopting a child with limb differences but I suppose those talks have always been vague "someday" talks. We've met families who have adopted multiple children with limb differences - those are some supermoms! This week, I realized that my reality could include multiple children with limb differences (too early to tell on this baby so no definitive answers yet.) And, I had some moments of panic - mostly the overwhelm of double the prosthetics, double the doctors, double the surgeries, double the tears & fears, double the therapies, etc. And I had some moments of great joy - R pointed out what a great teacher Will would be!
Mostly, I struggled with how to pray. I absolutely love Will just the way he is. I see Will as complete & whole- his hands & legs & feet are just another part of him just like his curly hair and his zest for life and his great laugh. He is not less to me because he is missing parts. I love his handprints & footprints. I love how he holds onto my hands. I love watching him accomplish simple tasks & challenging tasks. I'm crazy about him! And we are teaching him that he is fearfully & wonderfully made (psalm 139.) So, how in the world could I pray for this next babe to have hands & feet and 10 fingers & 10 toes? I would feel like I was somehow saying that Will was not fearfully & wonderfully made just the way he is. I would feel as though I were somehow betraying Will & saying he is "less whole." He is not. R & I discussed this a lot last night & I pointed out to him that if I could go back to June 20, 2007, when we first began to learn about Will's syndrome, I would absolutely not change him. I am confident that I have been so over and abundantly blessed in experiences and the people we have had the opportunity to meet and even in the bonding between us & our child and in our marriage - and none of that would have necessairly happened had Will been born with 10 fingers & 10 toes. I am just convinced that as C.S. Lewis said, because my depth of pain was so great, my depth of joy is even greater. I can't even describe the incredible feeling of knowing that when my child steps or grabs or smiles or talks or colors or feeds himself or runs or rides a tryke- it is a miracle. It is a miracle. And I am his mom! God has & is fulfilling Jeremiah 33:3 in that He is showing us great & mighty things which we couldn't possibly have imagined that summer of 2007. A huge part of me wants this babe to know the blessings & victories that Will knows - it's as though I'm afraid that if they are born with hands & feet, they will feel left out of all the cool experiences & relationships Will gets to be a part of!
So, I can't justify praying for hands & feet for this baby - it just feels wrong to my heart. But, there's also a part of me that says it would be normal to want to spare your child pain & grief & challenges - so I don't want to pray intentionally that they have a syndrome that will undoubtedly bring pain & challenges. That would make me a crazy woman. This world is hard enough without adding extra challenges! (And this poor child doesn't need a crazy woman for a mom!) - Seriously, can I blame the hormones for my confusion?!?!? Perhaps those of you who have a child with some sort of difference or syndrome can relate? (Or, seriously, am I losing it?) And then I worry that if this babe doesn't have limb differences, there will be judgements and comparisons made by others between my children - & I don't want that.
Selfishly, I am fearful of doubling my stress/therapy schedule/doctor appointment schedule/etc. Selfishly, I confess that I am jealous of many of my friends (not that I don't love you guys - I just envy you - forgive me?) It took us a while to get this babe & I struggled with God big time on that one. (Somehow I managed to convince myself that surely after dealing with a miscarriage and then all the pain and challenges of the pregnancy with Will - surely He would grant a quick conception with pregnancy #3... not to be. Of course, He never promised me that - it was my own short-sightedness & desire to control my life. Seriously, you would think by now I would learn!) I've come to realize that His timing is perfect and I have to accept He is sovereign & good - even when I can't understand His ways.
Anyway, a part of me was jealous of girls this week who don't go to their doctors in fear and spend more time crying with their obgyn than anywhere else. I was jealous of couples who don't sit/lay through an ultrasound while asking bizarre questions such as, "do you see elbows? How many legs do you see? How about wrist joints?" etc - just not the norm. While thankful for our experiences & who God is growing us into, a part of me just wanted to be "blissful pregnant girl! (instead of shaking/crying crazy preggo!") By the way - God did grant us a moment of comic relief from the stress in that this babe is a gymnast- lots of fun movement during our ultrasound Wednesday! But this is "my normal" & that is okay. I am thankful that our doctor is very compassionate & thorough and patient with my endless neurotic questions.
My mom suggested last night that rather than pray specifically about this child's body - perhaps I should be praying that God prepare me for whatever this child needs. She pointed out that all children have specific, individual needs requiring special skills in their mothers. Some may have names for those needs such as a syndrome but they all have needs. Some may have very obvious needs and others are known only to their mother. Some may have special needs for a season (such as a learning delay or rebellion or a discipline issue) whereas others have needs for life. Regardless, this child God has prepared for me needs me to be prepared for him or her and their very specific needs. So, despite that I don't know how to pray for this child, I do know how to pray for myself - that God will prepare my heart & our family for this child. That He would prepare Will to be a great big brother & that He would prepare our marriage and our home and our community and our friends and our extended family to love and accept and embrace this child - exactly as they are - whatever that may be.
I love, love, LOVE that during our pregnancy with Will (& since), we have felt like so many people had invested in his life through prayer. I've met total strangers in grocery stores & airports who had read this blog or who knew someone who knew us or had heard about us in their church & had committed to praying for our baby. Wow- that is humbling. At one point, I tried to even keep track of names so that I could tell Will someday who had prayed for Him. I lost track - but God knows & we are blessed. I love that at age 2, Will has a huge community of people who have specifically prayed for him - what an investment you have made in our son - we can never thank you enough. I do want that for this baby - there is something so humbling & awe inspiring to know that others have prayed for your child. So, thank you, for praying for this baby - for investing in this tiny life- that as God forms them exactly as He intends (however that may be), that He would prepare them for our family, to meet His purposes, & that He would prepare us to parent this child. Thank you! We are blessed.

(And also that He would help relax me in this next month as I wait for our next ultrasound at 14 weeks and hopefully some more definitive answers. I think I can do okay when I know something to deal with - it's the not knowing & my imagination that are so hard in the meantime!)

Coming Soon...

And Look Who's Jumping for Joy!!!

Big Brother, Cowboy Will!!!

After 2 ultrasounds, we wanted to share our exciting news with you! Please pray for our family during this time!

Baby is due August 31 (the day after Will's 3rd birthday - Happy Birthday Will!!!)

Will is so excited to be a big brother (don't think he realizes how it will change his life yet!) & has kept us laughing for 8 weeks! I'll post "Willisms: the Baby Edition" in the next day or so!