2009 Christmas Letter

I've never been one to write a lengthy Christmas letter. Sometimes I don't even get any Christmas cards sent! I have done postcards with a picture of the girls and a short synopsis of what we've been up to...but not this year. This year, I feel God is leading me to write something different.

You probably already know of the tragic losses my family experienced in August. We headed to Kansas City mid-August to get Kristen's lung surgery out of the way before cold and flu season hit. We were so careful with her exposure to others, knowing that an infection in her right lung would eliminate the possibility of thoracoscopically (minimally invasively) removing the pulmonary sequestration that she was born with. The excess lung tissue needed to be removed, and we certainly didn't want the doctors to have to open up her chest to do it. Despite a picture-perfect operation, an equipment malfunction caused a vein to tear. The very last step in an extremely long journey didn't go as we planned, and we lost our baby girl on August 17th. Just four days later, my mother had a heart attack and died. The waves of grief continue to sweep over me from two different storms.

I've asked many different "Why?" questions over these last months. One that's been on my mind recently is, "Why are we, even as Christians, so inadequately prepared to deal with death?" Since the Fall, physical death has been a part of life on this earth. For something that will affect all of us at one time or another, why are we so ill-equipped to face it? I don't have an answer, but I do have some suggestions on ways to help someone who's experienced the loss of a loved one.

First of all, don't be afraid to say the loved one's name. Just the mention of the person's name may bring tears, but it's okay. For me, to hear someone else speak of Kristen means that she hasn't been forgotten. I certainly will never forget, but to think that others will makes the hurt sting that much more.

Secondly, don't ignore the situation. There are some who are very careful to not say anything at all about the loss of Kristen or my mom. It’s likely that they've never experienced the loss of someone close and simply don't know what to say, or they think that bringing it up will cause more pain. Even if you've never experienced death up close, you can be a source of help. Acknowledge the loss...give a hug, make a phone call, send a note, write an e-mail, send a text message! A simple “I'm sorry, I don't know what to say”or “I'm thinking of you” or “I'm still praying for you” truly means so much.

People often feel helpless in situations where someone they know has lost a loved one. You can help in some very tangible ways-- bringing a meal over, shopping for groceries, cleaning house, etc. We've experienced an outpouring of all these things, and more, and they have been so helpful and very much appreciated. Knowing that my family’s basic needs were being taken care of allowed me the time I needed to at least begin to sort out the events that have unfolded in our lives. No one on earth can provide the one thing I want most--to have Kristen back in my arms, but all that is unfulfilled here will one day be redeemed in heaven.

Be careful about offering statements like, “I know just how you feel.” Will and I lost the same daughter; my brother and I lost the same mother, but each of us had different relationships with Kristen and my mom. There is, however, a kind of kinship among those who have experienced loss firsthand. Those who have been there do understand, but only God truly knows what we feel. Those who are grieving the sudden loss of a loved one have likely been shaken to their core. They probably will not seem like themselves, but give them some latitude to find their legs again. Giving unsolicited advice can come across the wrong way. Being told, “You’ll feel better if you keep busy,” will likely not be any kind of help or a comfort to someone who’s wondering how they’re going to make it through the next minute or hour or day.

Understand that grief is not like the flu...you don't get over it. It's a miry, mucky mess that a person who has lost a loved one just has to go through. There are no shortcuts or detours. You can't make the journey for someone else. Everyone's journey is as unique as they are. You can--and should--pray that God gives that person the grace to make it through each day until they get to the other side. Be there to support them in whatever they might need from you. They will be grateful.

Despite the tragedies we’ve experienced this year, we have been blessed with so much…the addition of a beautiful daughter to our family, three months of memories with Kristen to cherish, watching Emily and Grace grow into the young ladies God created them to be, feeling the love of our church family and so many loved ones who have rallied around us (and continue to do so) during this very difficult season of our lives. God is very present and working here! We may never understand His plan this side of heaven, but we can rest in His promises. Yes, we grieve, we ache, we cry, but we do them all with HOPE.

Deuteronomy 31:8
The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.

2 Corinthians 12:9
My grace is sufficient for you, for my power is made perfect in weakness.

Psalm 147:11
the LORD delights in those who fear him, who put their hope in his unfailing love.

Jeremiah 29:11
“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

None of us can change what has happened in the past. All of us, however, can change what happens next. If your relationship with God is not what you know in your heart it should be…if who you are is not the person you know that God created you to be, then change. Seek the One who created you. Seek the One who loved you enough to die for your sins. Seek Him. The first part of Isaiah 40:26 says, “Lift your eyes and look to the heavens.” That’s what Kristen did so often, and I pray that we all will take her cue.

May you have a blessed Christmas,
Kim (on behalf of Will, Emily, Grace…and Kristen)

My miracle

I’ve got so many things on my heart. The emotions and feelings that I have experienced over the past several months encompass it all…from such tremendous joy at the safe arrival of our baby girl in May to the greatest sorrow I’ve ever known when she left us in August. The days since have been filled with tears, anger, disbelief, wonder, gratitude, helplessness, love, but most importantly, trust. I continue to trust that God is in control. Even through the anger and the tears, I know God is there. At times, I feel like I’m all alone, but I know differently. I’ve discovered that there’s a chasm that often exists between what I feel and what I know.

Not long after Kristen’s death, I was in church listening to someone talk about miracles. I remember feeling very “cheated” because I didn’t get my miracle. As I sat there, becoming very angry, it was as if God whispered in my ear, “But you did get your miracle." Reflecting on that, I couldn’t argue. Kristen is my beautiful miracle. She was the wonderful surprise gift that I never knew how much I wanted until she was given to me. She changed my life in ways I never anticipated, and I will never be the same.

I’ve had some very honest conversations with God, asking “Why?” and even questioning His plan (“Surely, there was another way, God!”). I’ve been at a place where I didn’t even know what to pray. I’ve been hit with unexpected waves of grief that have completely knocked me down. But through all of that, I still know that He loves me. He knows my pain, my heartache.

Interestingly, my life today looks very much, from the outside, like it did about a year ago, Inside, however, I know it to be very, very different. I’ve cried more tears than I ever thought humanly possible. My heart has felt an ache like I never knew it could. My arms have longed to hold that sweet baby again. My ears have strained to hear her crying for me. Even so, God has not abandoned me. He has cared for me through the loving kindness of so many people. I am truly blessed.

"She is now Perfect"

A month has passed now since Kristen died, yet it seems like a lifetime ago. This is an account of that day, and I share it for a couple of reasons. First, I feel a need to write it all down. Maybe I'm afraid of forgetting. Maybe it's just a way to work through things. Regardless, I feel compelled. Second, I hope that you will see, along with me, the good things.

On August 17, 2009, we met with the doctors, chaplain and social worker around noon. Ron, Melody, Tammy and Kevin were with us as we heard them tell us that Kristen’s brain had sustained too much damage during the long bout of CPR on Friday. We had to prepare to say goodbye.

We knew that Jan, Emily and Grace were on their way to the hospital from Ness City. Will’s aunt and uncle had so kindly offered to bring them. We expected them to arrive around 2 or 2:30. We dressed Kristen in a sweet flowered dress to try to cover some of the many tubes and wires that were attached to her. She didn’t look like herself…she was so swollen. Emily, Grace, Will and I met with Leslie, a child life specialist from the hospital, who explained to the girls what they would see in the PICU. She showed them pictures of the equipment and gently answered their questions.

After that, the four of us made our way back to see Kristen in the PICU. We all got to hold her and just be together as a family. The girls went back to the waiting room while the doctor removed Kristen’s breathing tube. I held her in my arms as all of our family and friends filed silently into that tiny room. Kevin prayed and read scripture as everyone said their goodbyes. Will held our sweet baby as she took her last breath around 5:30.

We gathered our things and left that hospital with an empty carseat, heavy hearts and swollen eyes. I called my mom from the road to let her know that Kristen was gone. Little did I know that it would be one of the last times I would talk with her.

We arrived home late Monday night to a house filled with baby things…the pack and play in the living room, her high chair in the kitchen, her rocker seat, her blanket and toys. We moved all those things to her room and closed the door, unable to even look at those reminders of the baby we no longer had with us.

That’s the very sad, physical part of what happened. There were, however, some good moments over those 3 ½ days as well. Friends and family were right there to support us, some driving a very long way to be there. The many phone calls and messages made us feel so loved. The amazing number of visits and guest book entries left on our CaringBridge site humbled us greatly. Hearing of how people were constantly checking for facebook updates made us realize how much our loved ones care about us. It’s hard to even imagine how many prayers were being prayed for us that weekend and continue to be lifted up for us.

We were able to talk with the surgeon, to hug him and let him know that we were praying for him. He seemed so very broken. I don’t know about his relationship with God, but I never got the impression that he was a man of faith. I continue to pray that he bows the knee and submits himself to the One who gave him life and the talent to be a great doctor.

We saw our dear pastor rise above his own sadness over our situation and lead us when we needed him most. He baptized our baby as soon as he arrived at the hospital on Saturday. He prayed with us, cried with us and loved us through some very difficult days. He gently prepared us for what lay ahead of us and held us up as we walked. He spent time talking with Emily and Grace, letting them know that they are important, too. We’ve always known he was special, but he went above and beyond the call of duty that weekend, and for that we are grateful.

Our family and friends that rallied around us made such a difference, not only to us, but to the hospital staff as well. They definitely took notice of Kristen’s loved ones! I believe they saw firsthand what it means to be like Christ.

I will close with this…on a wall in our church’s fellowship hall are places for prayer requests and for answered prayers. Soon after Kristen’s surgery had been scheduled, I had placed a 3x5 card under prayer requests with Kristen’s name on it. I added a request “for safe surgery on Aug. 14th and a quick recovery.” Our first Sunday back, I noticed that the card had been moved to the answered prayer section. Written across the card were the words, “SHE IS NOW PERFECT.” Indeed, she is.

One month down, the rest of my life to go...

It's been a month today that we held Kristen as she breathed her last breath on this earth. It's been a month since we left the hospital very empty-handed. It's been a month since we arrived home to a house full of baby things that had to be hidden from sight. It's been a month, and I'm still sleeping with the bathroom light on. It's been a month, and I still cry every single day. It's been a month.

Somehow, it feels like so much more time has passed than a month. Other months have slipped by so quickly, but not this one. In this month, I have cried out to God, poured out my heart to Him more than I ever have. I have pressed into Him more than I ever have, too. I continue to pray for His grace to get me through this very dark place. I am intentionally and specifically asking Him to sanctify this pain for me. Though I know there is no way to sidestep this heartbreaking, cut-to-the-core pain, knowing that He can someday use it (and me) for His purpose does make it a tiny bit easier to endure. Some days, it's a very tiny bit, but it's there.

I suspect these "anniversaries" will never be easy. The 7th of every month will remind me that she would have been another month older. The 17th of every month will remind me of the day she left us. I not only grieve not having Kristen here to hold, but I grieve the things I'll never get to experience here...her first words, her first steps. I'll always wonder what she would have looked like as she grew. Would she look more like Emily or Grace? I'll always wonder if she would have like creamed spinach like Emily did or would have demolished her 1st birthday cake like Grace. I'll always wonder if she would have had curls when she finally got some hair. I will always remember that beautiful smile...and those eyes.

If she can see me from where she is in heaven, I hope she's pleased with what she sees. I'm so proud to have been chosen to be Kristen's mom.

A letter to Kristen

Today, I found a short letter I wrote to Kristen while she was in surgery:

August 14, 2009

My dear sweet Kristen,

We are waiting now as the surgeons are removing the lower lobe of your right lung. Hugs and kisses in the hallway were hard to do because I knew it meant they would be taking you away to the operating room.

We continue to pray for you, as do so many others. You are so loved, my sweet baby!

Your sisters miss you and send their love. Daddy got you a very cute Curious George monkey to bring to you after your surgery. George is wearing a bright yellow hat!

All my love,
Mommy

I’ve sat down many times to try to put into words all we’ve experienced over these last days…it’s so difficult, yet I feel the need to do it. Three weeks ago at this time, we had arrived in the waiting room at Children’s Mercy. I left to find something to eat at the nearby snack bar since we had not had lunch yet. One of us had to remain in the waiting room at all times. After I returned with a little something to eat, Will left in search of some food. We ate together and talked for while. A nurse called at 3:35 to let us know that they had started the operation. We prayed and talked and made plans to add “Dinner with Mom” and “Dinner with Dad” on the calendar for both Emily and Grace. We wanted them to have individual time with each of us and realized that if it wasn’t on the calendar, it often got pushed to the side. We talked about family game nights, movie nights, ideas for family prayer and devotions. We made plans for the girls’ upcoming birthdays and talked about dates for Kristen’s baptism. We got a call from the nurse at 4:45 that the surgery was going well and should be done in another hour or so. The next call we got was puzzling.

In the waiting room, they will call your name when there’s an update on your child. They direct you to one of four small rooms with a phone, and you wait for the phone to ring to talk with the nurse. We’d already gotten two of those calls…one to let us know they were actually starting the surgery and another to let us know it was going well. This third time, we went to the appointed room, but the phone never rang. After several minutes, a chaplain came in and told us that Kristen had coded and that we needed to wait there. From that point on, I lost all sense of time.

The surgeon came in and told us that the team was still working on her, but that it didn’t look good. The surgery had gone picture perfect up until the very last step. The most difficult part was over and all that remained was to clamp off a vein, snip it and close up. Here’s where things went very wrong. The clamp applier malfunctioned, causing the clamp to scissor a bit on that vein. Dr. St. Peter pulled the vein taut and put another clamp right above the bad one. It scissored as well, the vein tore, and blood went everywhere. He did what he could, but there was no more vein to work with...they were right at the heart. A cardiac surgeon came in, oversewed the spot and did get the bleeding stopped, but Kristen had lost a lot of blood. Her heart emptied out at one point and she coded twice. All in all, they did chest compressions on her for 1 ½ to 2 hours. Blood was moving the entire time, and they hoped it would be enough to get sufficient oxygen to her brain, but they weren’t optimistic.

Will’s sister, Joy, had come up to the hospital, as had our dear friends, Robert and Andrea. We all waited in the PICU (Pediatric Intensive Care Unit) waiting area for what seemed an eternity. The area was full of people (and noisy children), but we weren’t able to even see Kristen until well after 9:00 p.m. She was very swollen and had tubes everywhere. We prayed over her and cried and asked God to restore her.

I've already written about the next days, as we waited to see the extent of the damage to her brain. I'll save the account of her last day on this earth for another time. It's incredibly sad and amazingly beautiful, all at the same time.

God bless you all,
Kim

Another loss

I'm at a loss right now as to what to even say. I will, at some point, explain more about Kristen's last hours. There have been some amazing "God moments" that I would like to share. My heart is too heavy right now to go there. I found out this afternoon that my mom had a heart attack yesterday and passed away. In the midst of trying to celebrate Emily's 11th birthday today, my heart is broken beyond belief.

I am thankful for the sweet angels who did so much to make Emily's birthday as special as possible. Kristen's funeral is Monday afternoon. Her obituary is here.

Kristen Elaine Eckels
May 7, 2009 - August 17, 2009

We love you so much,
Mom, Dad, Emily & Grace

Hearts are heavy

My heart is so heavy right now. Kristen handled the switchover from the oscillating ventilator to the regular one wonderfully. Once the switch was made and they were sure she was stable, they took her down for a CT scan of her brain. The images were fairly definitive that the brain had sustained too much damage during the 1 1/2 - 2 hours of chest compressions on Friday.

They've taken her off all medications that will affect her brain (paralytic, sedative and pain meds) and plan to see what happens by around noon tomorrow (24 hours). They don't expect any purposeful movement, but are giving ample time before we need to make any decisions.

We are not giving up, so please, please continue to pray! We are, however, trying to prepare ourselves for what may be ahead. It's not good, and it hurts beyond what words can express. We thank you and cherish all the many kind and encouraging words. We know that God can still, even now, restore Kristen's brain; we pray that He will.

Very small signs

Kristen's pupils have been responding to light today (they were not responding last night). She's also shown signs of trying to swallow (rudimentary, but still there) and was trying to breathe earlier. They've since put her on medication to keep her from moving as it interferes with the oscillating ventilator she's on (it keeps the lungs constantly inflated). Praise God, these are all positive signs! They are very small signs, but indications nonetheless of some brain function.

They're working to wean her from the ventilator she's on to a regular ventilator so they can see how productive her tries are at breathing on her own. We hope that will happen in the morning. Once that's done, they plan to do a CT scan to see what her brain tissue looks like.

It's been an exhausting day, but we definitely feel better tonight than we did last night. Visits from family and friends made the day much easier. Kristen's still got a very long way to go, but she's a strong girl. We thank you all for the many, many heartfelt prayers. Keep them coming!

Keep praying

No changes this morning. Kristen is still on the ventilator. Cell phone usage is difficult as there are just a few places we're allowed to use one. If you need to get in touch with us, you can call 816-234-3500 and leave a message. Kristen is in PICU Room 9.

Complications

I don't even know where to start, and I don't think I'll make it through an extensive update without falling apart. This day has certainly taken a turn we did not expect.

Kristen had a major complication during her surgery. She coded a couple of times and they performed CPR for an hour and a half. Their concern now is a lack of oxygen to her brain. We know that God can heal her and bring her back from this, we just pray with all our hearts that He will.

We thank you for the many, many prayers and just ask that you keep them coming. And please also pray for Emily and Grace. They don't yet know the extent of what's going on.

Love and thanks,
Kim

Ahead of schedule

We just got a call from the hospital. They're running a little ahead on today's schedule and want us to come in at 12:00 instead of 12:45. It looks like surgery will start earlier than 2:00.

Surgery tomorrow!

We made the trip to KC with no problems at all. Kristen slept most of the way. Aside from a couple of cries in the parking garage at Children's Mercy, we didn't hear a peep out of her!

The schedule for tomorrow has changed a bit. We check in at 12:45. Her surgery is scheduled for 2:00-5:30 p.m. The good news there is that we can sleep in. :) We'll keep you posted...

Romans 12:12

I just got Kristen to bed (we both napped a bit in the glider before I laid her down in her crib) and need to take care of a couple of things before heading to bed myself. We leave in the morning for Kansas City!

Emily & Grace are in Ness City with Grama & Grampa Eckels, having fun and making great memories. The house was very quiet today without them! I felt very unsettled much of today, anticipating the next few days, but that feeling changed to one of reassurance after church tonight. Hearing the prayers prayed over Kristen tonight helped so much, as did the many hugs. Thank you, Foundry folks. You are amazing!

God is at work here, and I'm grateful for His every provision. Thank you, Lord, for this sweet baby and for the opportunity you give me daily to "be joyful in hope, patient in affliction, faithful in prayer." Please watch over us as we travel tomorrow. Protect us and guide us. Give Emily and Grace assurance of Your presence. Thank you, Jesus.

Dr. St. Peter

Dr. St. Peter just called this afternoon (yes, on a Sunday!), so we've got answers to our questions. I won't go over them all, but here's the gist of the conversation...

On August 14th, he will be removing the lower lobe of Kristen's right lung. There's a natural division between the lobes, making it much easier to separate the lung at that point. We all have 2 1/2 times more lung capacity than our hearts can keep up with, so the removal of this lower lobe should be no problem for Kristen later in life.

The surgery will take about 3 hours and will require 4 incisions: a 5 mm incision for the camera, 2 "stab" incisions for the left and right hands to work through, and another 5 mm incision for the retractor. The 5 mm incisions will require a stitch or two inside. These will absorb and not have to be removed later. The stab incisions are so small that they won't need stitches at all.

Once we're done with the surgery, we shouldn't ever have to go back for a scan or followup related to this sequestration. The lesion is anatomically contained, so once it's removed, it's done.

Dr. St. Peter has operated on a baby as young as Kristen and is comfortable going ahead with this now, as opposed to waiting another 3 months and risking an infection in that lung. An infection would seriously complicate the operation. And I must have misunderstood him when we met right after Kristen was born. He does about 2 of these operations a year (sequestrations and CCAMS are quite rare).

For now, we're doing okay with all of this. That may change (for Mommy at least) as it gets closer! Our prayers are for peace about the operation, safe travel to KC and back, and that the doctors and nurses who care for Kristen have the skills and compassion they need to provide the best care possible.

As we've said before, we truly appreciate all of your prayers and concern. God cares for us in so many ways, and one of the most special ways is through the love of family and friends. Thank you, and God Bless!

Surgery scheduled

Kristen's surgery is set for August 14. She has to go in at 3:00 p.m. the day before for a pre-anesthesia work up. We don't know the exact time of her surgery yet, but it will be one of the first of the day (they stack them according to age, and she will most likely be the youngest).

I've got a list of questions for the surgeon, who is supposed to call me back. When he called last Friday, I was driving and couldn't write anything down. Dr. St. Peter said he'd be happy to talk with us any time. The trick is trying to catch him!

Kristen is full of smiles and coos these days and is very good a rolling over (both back to tummy and tummy to back). She's also sleeping about 6 hours most nights (yeah!). We appreciate the continued prayers and look forward to having all of this behind us!

Much love,
Kim & family

Pulmonary sequestration

Well, it's not the outcome we'd hoped for, but we have the results of the CT scan. It's not a CCAM as they originally thought, but rather a pulmonary sequestration. I've added some links in the "Resources" area of this site; they explain it better than I can. After talking with both the surgeon at Children's Mercy (the one who ordered the scan) and our pediatrician here, I understand a sequestration to be similar to a CCAM in that it's non-functioning lung tissue. They differ, however, in that a CCAM is generally cystic and does not have any blood vessels feeding it, while a sequestration does have blood vessels attached. The scan report very plainly stated that there were blood vessels present in the lesion, which measures about 2.5 x 1 x 1 cm. It's not large and is not interfering with Kristen's breathing at all. This one is not attached to the airway, though some of them can be.

Even though she's having no difficulties, the sequestration needs to be removed. If it is not removed, there is a chance it will become malignant later in life. Because of the blood flow through the lesion, it can also cause circulation and heart problems.

As long as she has no respiratory infection, the sequestration can be removed thoracoscopically (minimally invasive). If she gets an infection, it becomes much more difficult to remove the lesion and would most likely require opening up her chest.

The prognosis seems quite good after surgery, and this surgeon has performed many of this type of operation. We still have to schedule it, but will most likely be looking to have this done mid-August. Kristen will be about 3 1/2 months old at that time, and we'll still be ahead of the time of year when she would be more likely to get a respiratory infection.

Our faith is not wavering...we know God is in control of the situation and will bring us through it! He has given us a beautiful baby and shown us His mercy time and time again since her arrival. We thank all of you for your continued prayers!

CT scan done - home again

Just winding down from a long day today. We arrived at CMH at 7:30 this morning for Kristen's CT scan. Everything seemed to take forever! They started with applying lidocaine to her arms and ankles (to numb possible sites for the IV) and ended up having to stick both of her little arms. Ouch! They did end up sedating her because they needed to slow her breathing for the best possible picture. We were with her while they put the IV in, but the nurse took her away for the sedation, contrast and scan. We had to wait about 45 minutes and got to see her again when she was waking up. Poor little baby was so groggy, but she did great. A radiologist confirmed that it was a good scan, but we won't know the results for a couple of days.

I fed her before we left Radiology at 10:30 (she hadn't been allowed to have any milk since 4:00 a.m.). She was hungry, but so sleepy! After some lunch and a quick stop to see Will's older sister, we headed home. The trip took an extra hour and a half. Kristen was hungry, but still sleepy, so she'd eat a little, then fall asleep and wake up an hour later hungry again. We stopped three times to feed her!

We're all glad to be back home from a very quick trip. Kristen went to bed about 10:00 tonight, which is early for her. She stayed up longer than her sisters or her daddy...we're all pretty tired. I'm going to sign off and head to bed myself. We should know something by noon on Friday...

2 months old - heading to CMH next week

Just a quick update today...Kristen is 2 months old! Her 2 month check up went well. She's up to 9 pounds (10th percentile) and is 21 3/4" long (25th percentile). She's been able to wear some of her 0-3 month clothes without completely drowning in them and we've graduated to size 1 diapers. (They have PLENTY of room, but the newborn diapers were getting a bit snug.)

She also had 2 shots this afternoon, so she's not exactly happy at the moment. Her sisters got suckers at the doctor's office, and Kristen got shots. I think she got the short end of that stick!

We leave next Tuesday (July 14th) for Children's Mercy in KC. Kristen will have a physical at 1:30, then return the next morning at 8:00 a.m. for her CT scan. We believe that the results will confirm that she is perfectly healthy! We pray that the confirmation will be a testimony of God's healing and that her story will make a difference in the lives of many. Please pray for a safe trip for us and that Kristen does well with the test preparation (she's only allowed to have Pedialyte--no milk--after 2:00 a.m. on the 15th). Thanks, and we'll keep you updated!

6 weeks old!

Little Kristen is 6 weeks old today! We've been dealing with near-daily bouts of fussiness...not sure if it's just gas or a bit of colic. We do what we can to get through those times. Our church family prayed over her last night. She was very fussy during prayer time at the end of the service, arching her back and crying. Once hands were laid on her and the prayers started, an amazing calmness came over her. It was so cool to see!

The Zantac seems to be helping her reflux, and she's much more alert during the day. I love to watch her study her surroundings. Her big blue eyes focus in on a face (or the ceiling!). She watches intently and often makes her mouth into a perfect little "O". Every now and then, she'll let out a sweet cooing noise. What a joy to observe!

She's not sleeping through the night yet, but she's getting better about going back to sleep after eating in the middle of the night. She's also getting better about WHERE she sleeps...for a time it was pretty much only in someone's arms!

All in all, we're doing well. Emily changes diapers and loves to help with bath time. Gracie sings to Kristen a lot and likes to help dress her. They're such good big sisters!

1 month well check

Kristen had her 1 month well check this morning. She's up to 7 lbs. 8 oz. (she's gained 9 oz. in the last 2 weeks) and measures 20 1/2 inches long. She's at the 10th percentile for weight and 25th percentile for height. She's got some reflux, which causes her to gag occasionally. It's a little unnerving to witness because she can't seem to catch her breath when it happens, but it's apparently not uncommon for infants. Zantac should help with the discomfort.

All in all, Dr. Edmonds said Kristen is doing great! We'll go back to see her in a month for another well child check...right before we head back to Children's Mercy for the CT scan. Dr. Edmonds said the CT scan was nothing to be concerned about. It should be very quick to do, and they may not even have to sedate Kristen (I was concerned they would have to). We're so blessed to have a wonderful pediatrician's office here!

2-week check-up

Kristen's visit with the pediatrician this morning went well. At 2 weeks of age, she's now back up to 1 ounce over her birth weight. (Emily was coaching her last night about "bulking up" for the big weigh-in this morning!) Dr. Edmonds checked her over and said she's "perfect."

Dr. said we could get Kristen out and about in another couple of weeks. It's hard not taking her out with us everywhere, but we know it's for the best. For now, Will and I will continue to take turns staying home with her on Sunday mornings and opt out of any large gatherings. Home visits are fine as long as visitors are healthy!

Children's Mercy visit

It's late, but Kristen is sleeping soundly, and I wanted to leave an update about today's visit to Children's Mercy. (I'm afraid if I leave it until tomorrow, it might not get done!)

We met with Dr. Shawn St. Peter at CMH at 10:00 a.m. If Kristen requires surgery, he will be the one to do it. He walked us through the process (which would be thorascopic -- minimally invasive) and told us that he was 100% sure that the CCAM was still there.

After a quick bite of lunch in the cafeteria, we headed to Radiology for an ultrasound. They couldn't see it! We spoke with the head of Radiology who said that a CT scan was the only thing that could tell the entire story about whether or not the CCAM is still there. Kristen is too small right now to go through a CT scan. They have us scheduled for on one July 15th. The doctor said that if the CT scan is clear, then he'll just call it a misdiagnosis and we'll all be happy. We say he apparently doesn't know WHO we're dealing with!

We continue to believe that Kristen is perfectly healthy, thanks to God's healing touch. We can't medically prove it now, but 2 of the 3 tests they use to see them after birth have shown nothing of the CCAM. She's not had any shortness of breath or any kind of breathing issues at all. Praise God!

She was an absolute angel today at Children's Mercy. She slept the entire time we were there (and on the trip to and from), with the exception of a little crying during the ultrasound. She did well on the trip home to Great Bend as well. She fussed a little about an hour from home, but got over it quickly. That made the long trip a much easier one, for certain! Emily and Grace entertained themselves in the back of the van, and I was able to sleep a little, though I ended up reflecting a lot on the events of the past 9 days. They've certainly been eventful days!

We have so much to be grateful for...God has blessed us beyond what we could imagine. The people that He placed in our path every step of the way have been example after example of His care and His mercy. And the power of prayer is amazing. Not only is Kristen doing well, but I've not had much pain at all (once Kristen was here, anyway!). Now, I haven't had much sleep either, but that's to be expected!

Thanks to all those who have prayed and continue to pray for us. We'll be praying that the CT scan in July will prove the doctor wrong and be a testimony to the power of our amazing God. In the meantime, we'll be enjoying our sweet baby girl!

Love,
The Eckels 5

Details!

Kristen and I were discharged from the hospital this afternoon and are so glad to be at our "home away from home" in Lenexa! She's doing great and looks perfect to us! We will meet with a doctor at Children's Mercy on Tuesday. They're planning to do an ultrasound (and possibly at CT scan) at noon Tuesday to check things out. The chest x-ray they did right after birth showed nothing. They did another one on Friday morning and thought they saw a shadow, but are going to leave any further testing to Children's. We are believing that the mass is gone...that God has intervened in this sweet baby's life!

Will posted the big details in the last entry. I'll go into more now...so if you want to know more, keep reading!

My water broke Thursday morning at 4:30. We grabbed our stuff (still packed from the earlier false alarm) and headed out in the rain to the hospital. We got into one of the birthing rooms at 5:30, and just as the anesthesiologist was getting ready to scrub for the epidural, the nurse checked and said I was moving too fast...no epidural! They then prepared to move me into the delivery room (more equipment there than in the birthing room). About 3 pushes and Kristen arrived at 6:25. Thankfully, it was quick!

Kristen did great. Everything they checked was wonderful. The neonatologist called her "Super Girl" and said she looked perfect. The doctors and nurses at St. Luke's were amazing. So many of them rejoiced with us at the birth of our miracle and offered their prayers that things continue to go well. Our story seemed to go quickly through the hospital. We heard of connections to Great Bend more than once!

She spent her first 30 hours in the NICU, just as a precaution. They let her stay in the room with me after that. Thanks to coordination between Grama Eckels and our dear friend, Tammy, Emily and Grace were able to come up to meet their little sister Thursday evening. They were so excited! Since Kristen was still in the NICU, the girls had to scrub in before they could see her. I think they would have taken an entire bath in iodine if need be to get to see that baby! Thankfully, they only had to scrub up to their elbows for 3 minutes.

We'll stay in KC through Tuesday, then head back to Great Bend after the appointment at Children's Mercy. Thanks to all of you for your continued prayers and support. As I said earlier, we are believing we have received a miracle and pray that it is confirmed on Tuesday!

Much love,
Kim & family (which is now just a bit bigger!)

It's a girl!

Baby Kristen arrived this morning (05/07/09) at 6:25 am. She weighed 6 pounds and 14 ounces and is 19.5 inches long. She is doing GREAT!! The doctor said that the mass in her chest that was 5cm x 4cm x 4cm on Monday morning is totally gone today!! What a miracle from God. Many, many people have been praying for this little girl and God has answered their prayers! There were many happy tears shed today by those who heard the story. We are truly blessed.

-Will

False Alarm

We thought we were going to have a baby early this morning, but she's apparently not quite ready! I started having contractions about 9:00 last night. They continued about 10 minutes apart until 1:30 a.m., then got to 5 minutes apart. We headed for the hospital and got there about 2:30 a.m. They monitored contractions from 3:00-5:00 a.m., and though the contractions got fairly strong and as close as 3 minutes apart, they said I was in latent labor, not active labor, and sent us home. (Basically, latent labor has contractions, but no progress on dilation.) In those 2 hours, I was still only dilated to 1 (same as Monday).

It didn't make for a restful night's sleep, and it wasn't the outcome we were hoping for, but we're still hanging in there. Thankfully, Will was able to stay up here for the rest of the week. Even though last night was a false alarm, I am so glad that he was here.

The snow in the snow globe is settling

Wow, what a day we've had! We arrived at St. Luke's this morning for a sonogram, then met with Dr. Wickstrom and several others. According to their measurements, the mass is larger (4 cm), but so is Kristen (over 7 pounds!). This doesn't necessarily mean the mass is growing...it's probably just that it's been measured by yet another person on yet another machine. Because they have to peer in between her ribs to find the mass, it isn't exactly easy. Everything else looks great.

Dr. Wickstrom (who was wonderful) gave us some options. We could go home and deliver in Great Bend, knowing that we would have to fly Kristen to KC should she have problems at birth; wait in KC and let the baby come when she's ready; induce on the 11th, but only if an amnio showed that her lungs were mature; or wait and induce on the 18th with no worries about lung maturity. None of us liked the first option. An amnio at this stage of the game does have risks and really wouldn't buy us that much time, so we set an induction date of May 18th, believing that, based on my history, I'll go into labor on my own before that (likely within the week).

Thanks to the graciousness of the Castiles, I will stay in KC until Kristen is born, then deliver at St. Luke's. Will is planning to return to Great Bend on Tuesday, then head back this way when I go into labor.

The doctors really can't tell any more about the CCAM than they already know until Kristen is born. Once she arrives, they will assess her lung function, then do an x-ray and possibly a CT scan to see what the mass really looks like. If she's having trouble breathing on her own, they'll stabilize her and transfer her to Children's Mercy (which is not far from St. Luke's). They may need to do surgery right away, or they may be able to wait a couple of weeks or a couple of months. It all depends on how well she's breathing.

Dr. Wickstrom's office was able to set up a consultation for us at Children's Mercy this afternoon. We met with a neonatologist and a surgeon, plus a couple of other people for over an hour. They reviewed my records and explained the process of what would happen if Kristen was transferred there from St. Luke's. We also toured the NICU. I pray we don't ever need to go back to Children's Mercy, but if we do, we are at least familiar with the facility. They were truly amazing! The doctors were great about explaining things to us, didn't rush us out, and answered all of our questions as best they could.

As much as this has shaken our world (we feel a bit like we're inside a snow globe), things are starting to settle a bit. We have a plan we're at peace with, one that will ensure the best care for Kristen, should she need it. No, it's not convenient, yes, I miss Emily and Grace so much, and yes, I'll miss my husband immensely when he leaves, but we do have so many positives. Friends that we were so sad to see leave Great Bend last summer are here now and have so graciously opened their home to us. The same friends have friends who work at St. Luke's. (Laura came over last night to meet us. She gave us great directions, set our minds at ease about the doctors, and prayed with us before she left.) We have so many friends back home who have been praying for us and offering to help with the girls. Some have even offered to bring them to KC! Our church family has rallied around us and shown us the love of Christ time and time again. We can see God's hand in every step along this bumpy path and are so excited to see what He has in store for our little Kristen.

We thank each of you for your support, your concern, your prayers and your love. We look forward to having our family back in one house very soon!

Much love,
Will & Kim

Heading to KC

Just a quick update today. We will be leaving for KC Sunday afternoon. Our appointment with the specialist is Monday morning. I'm prepared to stay, if necessary, until I deliver. We'll just have to see what the doctor says. We're grateful to the Castiles for offering a place for us to stay!

Will's parents are picking the girls up on their way through town today and will keep them for us (another blessing!). We know they'll be well taken care of, but this mom's having a tough time with the thought of not knowing when she'll see her sweet girls again.

I did find out that Dr. Marshall's sudden change of heart about delivering here was based on the fact that Dr. O'Hara is not sure about what type of CCAM Kristen has (there are 3 or 4). Some types are much more difficult for babies to deal with at birth. At least in KC, we'll have doctors who know what they're doing and facilities that can handle whatever Kristen needs.

Thanks for the continued prayers. I'll have my laptop with me and will make updates to this site as we find out more.

Big change of plans

I wasn't expecting to make another update today, but I got a call from Dr. Marshall here in town late this afternoon. He did finally speak with Dr. O'Hara today, and is now convinced that we should deliver in KC. Children's Mercy has an ECMO machine, while Wichita does not. There is a chance that Kristen would need this machine (which is comparable to a heart/lung bypass machine, only for newborns), and KC is the closest location.

They have an appointment set up for us for first thing Monday (yes, just 5 days away) to see another specialist at St. Luke's. There is a possibility that I might have to stay there until the baby arrives. Our heads are still swimming with all of this...just this morning, we were leaning toward delivering in Great Bend!

This may be God's answer to what we should do. It may all be the result of doctors being overly cautious. As Will put it today, it would be better to be where we have all we need and not need it, than to be where we don't and find we should have done something else. We have about a day to make a final decision about whether to go to KC Monday or not. Please pray for wisdom for us, for discernment and for peace in getting all the arrangements made, if necessary. Thanks so much!

God will work out the details

I saw my doctor here in Great Bend this morning. Kristen is doing well and does have her head down. (Yesterday, she seemed to be doing the hokey pokey...I was afraid she had "turned herself around"!)

We've still not heard from Dr. O'Hara's office in Wichita (neither has my doctor here). I have a call in to our pediatrician to visit with her about the level of care the nursery at the hospital here can provide. As long as that conversation goes well, I think we'll be delivering here in town. We do still have the option to deliver in Wichita, but logistically, it would probably create more stress than it would relieve.

Dr. Marshall is not in favor of inducing (unless absolutely medically necessary) at all, and they won't induce in Wichita until I get to 39 weeks. Based on my history, I probably won't make it to 39 weeks. Given that, we could either move to Wichita in another week or so and hang out there until I go into labor, or we could just make the trip once I do go into labor. Frankly, neither of those options sounds very appealing.

The mass measured about 2cm today, and most likely won't get any smaller before delivery. The fact that it hasn't grown since the original measurement (regardless of whether it has shrunk some or not) is a good sign. We continue to pray for no respiratory distress at birth!

I'm beginning to feel some peace about the whole situation...I've struggled over these last few days with handing everything over to God. I know in my heart He'll work out all the details, it's just working it all out in my head that's been the problem. I've needed a plan, and I think one is beginning to come together. Please pray that we are able to discern God's plans from our own and that Kristen's birth is the miraculous event it is supposed to be (with no extra drama!). Thanks so much for your support...we're almost there!

Frustrating day redeemed!

I'm almost hesitant to write anything about our visit to Wichita yesterday. There was no bad news about Kristen, just a lot of frustration!

After waiting at the doctor's office for an hour and fifteen minutes, we finally got in for the sonogram. Everything looked good as far as we know. Tara said the mass seemed to be about the same size, though Kristen is bigger (over 6 pounds!). Because she is growing, and the way she was positioned, it was difficult to zero in on the mass.

Once the sonogram was over, Tara said we were done. I asked about seeing Dr. O'Hara and was told that our appointment was only for a sonogram. Will had words with the staff while I went to the bathroom and shed a few tears of frustration (having a full bladder for nearly two hours by this point was NOT fun). We didn't get in for the sonogram until 12:15, and the doctor left at 11:30. We had no idea we weren't going to get to see her...that was the whole point of our going! I had asked specifically when I got the reminder call if Dr. O'Hara was going to be in. I didn't want to see another fill-in doctor. I was told she would be there...but not that I wouldn't get to see her.

After lunch, I called Dr. Marshall's office in Great Bend and talked with Debbie (the sonographer). She said that they would call Dr. O'Hara Monday and get back with me. Dr. Marshall is planning on me delivering in Great Bend, but he's never dealt with a CCAM. I'm not trying to second guess him, but I really needed to hear Dr. O'Hara's opinion on the situation.

This baby could in all likelihood be here in a couple of weeks, and I still don't have a good feeling about where we're delivering. Great Bend would be much more convenient, but I don't know if it's best for Kristen. I know Wichita would have the facilities/equipment, but I have no doctor there (Dr. O'Hara doesn't deliver babies). ARRRGGHHH!

Thanks to some wonderful friends, however, the day was redeemed with great fellowship. We spent the evening with the Stephensons and the Haydens and witnessed yet again how much God loves and cares for us. He brought them all into our lives years ago and continues to bless us through them.

We'll find out more on Monday or Tuesday and go from there. In the meantime, we'll do our best to put our trust where it belongs. Thank you all for your continued prayers!

No change

I saw my doctor here in Great Bend this afternoon, and nothing's really changed. They did a biophysical profile on Kristen (checking movement, etc.) and she scored 8 out of 8. She's definitely growing!

My doctor here thinks that returning to the specialist in Wichita will be a waste of time and money, but Will and I aren't so sure. There's an obvious difference of opinion about the size of the CCAM between the two offices, and it's difficult to put more stock in the opinion of the doctor who's never seen a CCAM before than in the one who's seen many. At this point, we're still planning to go back to Wichita on the 24th to see Dr. O'Hara (who will definitely be there this time!). We'll see what she thinks and then decide what to do about where to deliver. Please join us in praying that the decision will be clear to us.

I did find out what happened to the films that were supposed to be in Wichita at our last visit there. They were there, but apparently things get a little chaotic when a visiting specialist comes to fill in. Due to the cost of bringing him in, they fill the schedule completely full. The films may have been misplaced at the Wichita office, or everyone was just too busy to look in the right place...I don't know. I do know, however, they made it there.

Regardless, Kristen seems to be doing well at this point and may not require surgery right after birth. Evaluation of the lung would have to be done after her arrival to determine when surgery would be necessary.

Her head is down and her rump is front and just off-center to the right most of the time. Not the most comfortable position...for me anyway! Between that and fighting sinus issues, I haven't been sleeping well at night. Will and the girls have been great about helping out though. I don't know what I'd do without my amazing family and friends!

For the time being, no news is good news, I guess. I'll keep the site updated as we find out more. God bless you all!

Wichita doctor visit

Well, our Wichita appointment was yesterday. Dr. O'Hara was at a conference and had a Dr. Farb filling in for her. He told us the sonogram showed that the mass hadn't changed in size from when we were there 6 weeks ago. I questioned him about what the sonograms from Great Bend showed (that the mass had shrunk a couple of weeks ago) and he said he only had what the Wichita office did 6 weeks ago and yesterday. He checked and apparently the films never made it to Wichita as I was assured just last Monday that they would. We're a little frustrated!

There really wasn't any bad news, we're just not where we thought we were. The cysts that were in the mass 6 weeks ago are gone, and though the size of the CCAM hasn't changed, the size of Kristen has. Since she has grown and the CCAM hasn't, the right lung has more room and is developing (though not as much as we were told here). The fact that the CCAM hasn't grown is very good. And Dr. Farb does believe that indications show the CCAM is resolving.

They scheduled another appointment for us in Wichita in 3 weeks. I pray that Dr. O'Hara will be there then! (I'm sure Dr. Farb is a very good doctor, but I sure missed Dr. O'Hara's wonderful way of explaining things.) Dr. Farb didn't think surgery would be required right away for Kristen, should the mass still be there, but he still thought we should deliver in Wichita. We'll know more after the next appointment on April 24.

Thanks to you all for your continued prayers!

She's a contortionist!

I just got back from the doctor's office here in Great Bend. The mass hasn't really changed much from last Monday (still about the same size (1.19 cm x .909 cm), but Kristen's doing very well. Dr. Marshall is still very encouraged and sees no reason I can't deliver here in town (provided the doctor in Wichita agrees). They did a biophysical profile today, which basically tracks movement, increases in heart rate with movement, muscle tone, breathing rate, and the amount of amniotic fluid surrounding the baby. Dr. Marshall said she did perfect!

We head to Wichita this Friday to see Dr. Forbes (I think that's his name). Dr. O'Hara is out of town this week, and Dr. Forbes is filling in for her. He's from the east coast and travels around the country, filling in for maternal fetal specialists, such as Dr. O'Hara. Debbie, the sonographer here in town, will be working with Dr. Forbes 3 days this week in Wichita and will take all the films of Kristen's CCAM with her so Dr. Forbes can see the progression over the last 6 weeks. Though Debbie has never seen a CCAM resolve, Dr. Forbes has, so we're anxious to hear what he has to say.

We're of course grateful that the mass has gotten smaller and continuing to pray that it's completely gone by the time Kristen makes her arrival. And we thank all of you for your prayers! God has worked such a miracle in this little girl's life even before she has breathed her first breath. We stand in awe of Him who made us all.

Emily and Gracie were there to see Kristen blinking and smiling today. Debbie took several pictures of Kristen's face, most in 3-D this time. I'll post the best ones in the photo album. She's quite flexible...she had her foot resting on top of her head in one of the pictures!

The mass is changing

Great report today! The mass is continuing to change in texture (even from the last sonogram just 10 days ago) and is about 1/3 the size it was when they first discovered it (3.29 cm then to 1.2 cm today). I asked about the size of Kristen's right lung in comparison to her left...it's nearly the same size!

She's up to about 4 pounds now and growing very well. As active as she is, it's no wonder to me! I think she has developed her own exercise routine - it feels like kickboxing!

I go back for another sonogram here in Great Bend next Monday (3/30), then will see the specialist in Wichita that following Friday (4/3). We'll see what she says at that point...the mass could even be completely gone by then. If so, there is a possibility that we could deliver here in Great Bend instead of in Wichita. Emily and Grace are very hopeful for that so they can see their new little sister sooner!

We are all so very grateful - foremost for God's healing in this situation, His grace and mercy throughout it all - and also for all of the many prayers that have been lifted on Kristen's behalf. Thank you so much!

Resolving?

I had another sonogram today...quite an extensive one (35 minutes!). The size of the mass hasn't changed since last week, but the texture of it has. There are fewer cysts within it, and it's getting more difficult to distinguish. All in all, both the doctor here and the sonographer are encouraged by what they saw. Praise God, the doctor believes that the mass may be resolving itself!

Kristen weighs about 3 pounds 12 ounces right now and everything else they checked on her was just fine. Gracie was amazed at the number of pictures Debbie printed today, but we only ended up with a couple to bring home. One is of her nose and lips, the other is a fuzzy look at her face.

My next sonogram is a week from Monday (March 23).

"Follower of Christ"

I just got back from the doctor's office...with good news! First of all, my glucose test came back great (yeah!). More importantly, the mass in Kristen's chest is smaller than when they first measured it (YEAH!).

Dr. Marshall was even smiling today (I had decided going in that if he walked in with a long face, I might have to punch him!) He said everything looks good with Kristen...no excess fluid anywhere, heart rate is good, and breathing movements are just what they should be right now.

We are so thankful for all the prayers that have been, and continue to be lifted up for our baby. We are most grateful for God's hand in her life, which is why we chose the name Kristen...it means "follower of Christ."

Glucose tolerance test today

I headed to the hospital this afternoon for the glucose tolerance test. The sugar solution wasn't quite as nasty-tasting as I remembered, but I did take a straw along! (A nurse recommended using a straw to get the solution down quicker without having to taste it quite as much.) Hopefully, the lab will have the results to Dr. Marshall by the time I go in Friday...and they'll be good results!

Weekly sonograms

I had the first of our weekly sonograms today. Nothing's really changed. The mass in Kristen's chest is basically the same size as it was when we were in Wichita (3.29x2.29x1.79 cm). It is good news in that the mass hasn't gotten any bigger and there is no sign of hydrops (fluid build-up).

My doctor here basically told me that he will be faxing the results of each sonogram to the specialist in Wichita and doing what he can for me, but he has no experience with CCAM. (Dr. Marshall's delivered a lot of babies in 20 years, so that should tell you how rare this is.) Thankfully, his sonographer, Debbie, has seen CCAM before (she's the one who caught it in early February), but only 4 cases in 30 years. She's great. She also works with Dr. O'Hara in Wichita, subbing for them when someone's on vacation, and comes very highly recommended by Dr. O'Hara herself.

Next on the agenda...glucose tolerance test next week and next sonogram on Friday, March 6 @ 10:00 a.m.