A Reprieve...

Hello!

We spent our Memorial Day weekend in Colorado visiting Brandon's folks. It was a wonderful chance to escape the daily routine around here...and a bit of a distraction from all that has consumed us for the last two months.

The kids had a great time, and we did, too. We took a trip to the Denver Zoo, the kids went to Chuck E. Cheese's with Grandpa and Grandma while Mommy and Daddy enjoyed an evening out, we roasted marshmallows...and just had a nice, relaxing visit. We attended church with Aaron and Rachel on Sunday and were overwhelmed by the people that knew us because they have been praying for us faithfully throughout this ordeal. It was humbling and reassuring.

One of the highlights of the trip for Connor was a fishing excursion with Grandpa and Daddy. He caught three Sunfish, and we just had to share this video of catch #3 with you (see the end of this post). Watch all the way through to the end...it's worth a chuckle.

I have been feeling well and we are now 28 weeks along. Caden is breech, so most of the time, I have a head poking me in the ribs. I am definitely starting to feel some of the discomforts of later pregnancy, but I try to be grateful for every moment...a month from now, we will get to hold this precious baby boy in our arms. The kids are more aware of the baby now, as my belly has grown a bit over the last few weeks...they both got to feel Caden move in my tummy last night and were very excited.

We told Connor about the name that we'd picked out for his brother, and, as usual, he handled it with a grace that defies his age. He said "Even though he will be born dead, he still needs a name!" (excuse the harshness of that, but those of you who are familiar with what an honest and up-front age 5 is understand). We talked about heaven, and how if Caden couldn't be here with us on earth, we wanted him to go straight up to be with Jesus. He agreed.

I had an AMAZING sonogram with Jan before we left town. She got several great shots of Caden's face, and at one point, we even got to see him put his hands in his mouth and suck on his fingers. He also opened and closed his mouth several times while we were watching...almost as if he was saying "Hi, Mom!". Brandon had to work late, so Jan and I got to enjoy the moment together, and bawled our eyes out. It was incredible.

We are supposed to be having a 3D sonogram this week. A local company called Prenatal Imaging offers them free of charge to Alexandra's House families. They have told us that it is the amniotic fluid that gives them the depth that they need for the third dimension, so the sonogram may not work for us, but we are going to try. It has struck me how badly I want this to work, as our time with him Caden be so short, so any glimpses of him alive and well are so precious...please say a prayer that somehow, the images will come across. I am frightened that this will be just another disappointment, but want to see this little guy bad enough to try. If the pictures do work, we will be sure to share them with you. It will be on Thursday at 6:00 pm.

I am in full swing with the summer session up at Jewell, and Brandon is doing well at work, too. Connor and Kylee are outdoors for every moment they can be, and it has been great to have Connor out of school. Summer school starts for him on June 9th, so we are going to enjoy our schedule-less existence for as long as we can. :)

Hope this finds you all doing well and enjoying the sunshine. THANK YOU so much for all your e-mails and comments on our blog. It means so much to us that you take time to check in and offer your encouragement. We pour over the comments and love to hear what you have to say. We are so blessed.

I found this verse and thought it was especially applicable:

"Out of the believer's heart shall flow rivers of living water."

John 7:38

We pray that the waters in your life are flowing freely.

June 30th It Is...

Good Evening.

I had an appointment yesterday with my OB and I was able to set our induction date as we were hoping to.

I will actually be going into the hospital (Shawnee Mission Medical Center) on the morning of June 29th, where they will start the process of preparing my body to deliver our son. Hopefully, after a day of cervical softening, they will be able to start the actual induction Sunday evening. The Dr. seemed optimistic that if everything goes like she thinks it will, our little man will be born at or around noontime on Monday, June 30th.

She has told me that I can have an epidural right away, so I won't have to feel any pain, which is a relief. She was very kind and supportive and said that she will be there to deliver us, which is also a relief. Dealing with the an on-call doc that we don't know would make a difficult situation even more difficult. If everything goes like they are thinking it will, I can come home Monday evening.

I was relieved to be able to set a date. But when I got home from my appointment, I fell apart. What parent wants to choose the date to end their child's life? I hope and pray that God has a different plan for our son. And while I struggle with scheduling the induction, we will be 32 weeks along, and I know that medically, "cooking" him for any longer won't make a significant difference in his ability to survive, so it then becomes a balance of maintaining sanity while doing the best thing for him. While I feel it is right, I once again struggle with the position we have been put in.

It has been a long road, and I think as the date gets closer, many things will become more real...I wouldn't have imagined they could, but I think they will.

What will he look like? Will he cry? Will he be born alive? How long will we have? CAN WE DO THIS? Questions we won't know the answer to until we're there. But I know God is with us, and we know that you all, our faithful prayer warriors, will pray us through it.

We have had several other not-so-fun decisions to make now that we know about when this precious boy will join us...

I called Alexandra's House, and they were able to give us the names of a couple funeral homes that will be able to help us with that aspect of things. It turns out that one in the area will do infant preparation and burial free of charge, which is wonderful. At this point, we are not planning to do a memorial service, as we feel that after delivery, we will be ready to spend time, at home, focusing on healing ourselves and spending time with our two beautiful children, rather than trying to work out details for a service....that may sound gruff, but it is where we are at for today.

We have talked and decided that we want to have the baby cremated, and we plan to spread his ashes over my Mom's grave in Great Bend. I know she wouldn't mind sharing her space....and that she will already be holding her precious grandbaby long before we physically place him with her.

Several of you have asked what name we have chosen for our son. His name will be Caden Adair. Another "C" for the Carlson Crew...Adair is a family name...my Grandpa Haneke and sister Sarah's middle name. Two very strong folks in our family. We figured it was a name worthy of this fighter.

MRI Results

Good Morning!

We received my MRI results, and while perhaps we got our answer as to the cause of the problem, the news is still discouraging.

According to the MRI report, they were unable to visualize any kidney tissue in the baby...known as renal agenesis. This is a fluke occurence that happens shortly after conception...as the baby's urinary system forms, for some reason, the kidneys do not. Obviously, without kidneys, the body cannot make urine like it needs to, and given that amniotic fluid is made up almost entirely of fetal urine, these babies don't have fluid around them.

While we are grateful for an answer, we are also a bit frustrated, because we were told multiple times by our Perinatologist that the baby does, in fact, have kidneys. I called the Perinatologist's office yesterday and spoke with a nurse who told me that, in all likelihood, the MRI is correct. Given that I have hardly any fluid around the baby, visualizing structures like the kidneys on the ultrasound is extremely difficult. She stated that, more than likely, while the Dr. thought she was seeing kidneys, she might have, in fact, been seeing adrenal glands or some other structures that looked similar to kidneys, but were not.

This brings about a variety of emotions for us, as you might imagine. Had we known, from the beginning, that our little man didn't have kidneys, we might have moved down a different path. Yet here we are, six weeks later, just finding out that the information we were first given was incorrect. It is very aggravating...one of many times we have been told one thing when perhaps the truth is something different.

However, we also know that there is a reason that we didn't learn this information until now. God clearly has His reasons for not disclosing this to us until this point in our journey. We are becoming more and more aware, all the time, that He is in charge and our job is simply to follow and try to trust.

The other piece of news we received as a result of this MRI is that while our baby most likely has renal agenesis, this is not a genetically-linked condition. Therefore, if and when Connor and Kylee have their own children, it isn't something they will be at an "increased risk" for. I don't know if it's more comforting or more petrifying to know that this whole condition is just a fluke.

We thank you for your continued prayers and support. I have another Doctor's appointment on Monday and am hoping to set an induction date at that time. I think it will really help us to know what day we're going into the hospital...maybe allowing us to prepare, in more ways than one, to meet our son.

On A Bit Lighter Note...

We were goofing around with the kids this weekend and came up with these very real glimpses into our life:

As mentioned previously, Kylee got her hair cut last week. Here's the rear view of her new 'do...slightly disheveled, of course. Someday I hope to be able to post a picture of it all curled and cute:

Connor went on a field trip to Shatto Dairy farm with his class a couple weeks ago...here are some fun pics from that big event. Kylee and I went along and I stepped in a pile of cow poop about 30 seconds after setting foot into the barn...and then spent the rest of the tour focused on getting the poo off of my shoe. I am so thankful that I live in suburbia.

An explanation of the above picture: When we arrived at the farm, I opened the back door of the Durango to find my daughter all painted up...she had kept herself busy with the purple eyeshadow on the drive out into the country. I had no idea what she was doing until I pulled her out of the back seat. A proud parenting moment for me amongst all the other preschool Moms....in this picture I am sure Connor is thinking "Geez, what is WITH the purple eyeshadow?" Thankfully, he's not old enough to be totally embarrassed by us yet.


Here are Connor and his friend, Truman, in front of the tank where they cool all the milk:

At the conclusion of our tour, the kids got to sample several different flavors of milk...banana, chocolate, strawberry, even root beer...Kylee joined in the fun, too!

Cheers!

The Week in Review...

Hello and Happy Friday!

Just wanted to give you a quick update here before the weekend...

We went and met with Patti Lewis at Alexandra's House on Wednesday night. She was warm and very supportive of the decision that we have made to continue our pregnancy. She asked lots of questions, provided gentle counsel, and suggested some things that we might want to think about prior to our delivery date....it was a good discussion and not as much of a downer as I had thought it might be....mostly because many of you were praying for us, I am sure. So thank you.

As a part of our visit, we got to see many pictures of the babies and families that have been through Alexandra's House, and it was incredible. Even though these babies weren't "normal" by society's standards, they were each absolutely beautiful. God's hand in creating them was so evident as you looked at their peaceful faces, some living, some having moved beyond this world. In many of the pictures, the babies were cradled in their parents' hands or arms...and in most photos, the parents were smiling, which is incredible to me....further evidence of the grace and strength God will provide us in that moment. Patti also encouraged us to let Connor and Kylee come to the hospital to meet their baby brother...she says that children don't see what the world sees...and that we should allow them the opportunity to be a big brother and big sister, because that is, after all, what they are. We're still pondering this one, but I know that the thought of our three children in the room all together is one that evokes great emotion in me...and if it's a vision that I won't get to have for long, maybe I should snag it while I can...

We do plan on having pictures of our son taken by a photographer from Now I Lay Me Down to Sleep...they have a website if you want to see some of their work. These photographers volunteer their service for families like ours...www.nowilaymedowntosleep.org...get out your kleenex and have a look at these precious babies.

Jan did a sonogram for us this afternoon, and once again, our little man was kicking, poking, and prodding throughout the whole session. We did a get a good picture of his face, which is so precious to us. Jan scanned us for almost an hour, and it was such a gift (as it always is) to see his heartbeat on the screen. She tells us that she doesn't know what she is doing...but let me tell you what precious moments she provides us with, regardless of her feelings about her competence....knowing that we may not get to know our baby for long outside of the womb makes these moments even more sacred to us...we are so thankful for her time, and for the Women's Center that allows us into their space....

Next week will be a relatively quiet week. We found out that our insurance will not cover the cost of an autopsy after the baby is born, so in an effort to find out if the baby's kidney function is the cause of the lack of fluid, I am going to have a MRI done on Tuesday morning in the hopes that maybe it will provide us an answer about the root of the problem. I am scared that this procedure will only bring more bad news...but at the same time, how much worse can it be, and we feel that gaining as much knowledge as we can is important....I am guessing we will have to wait a few days for results following the scan, but we will certainly let you know what we find out.

I have remained in decent spirits this week. We will celebrate Brandon's 31st birthday this weekend, which we are all really excited about. Mother's Day will be tough this year...both because my own mother isn't here, and because my littlest one isn't healthy....but I am so grateful to celebrate this holiday with Brandon, Connor, and Kylee...God's greatest gifts to me.

Speaking of, Connor and Kylee are doing very well, and I want to post some pictures of them this weekend. Kylee got a new haircut this week that makes her look about a year older. Connor's school took a field trip out to the Shatto Dairy Farm a couple weeks ago, and I have some fun photos of that as well.

And the band plays on....

Happy Mother's Day to all you Mommies out there! :)

It All Began When...

I had mentioned in my last post that I might share a little bit of our son's history with you, especially with those of you who are checking and may not know how this all got started. :) It has been amazing to hear from all of you through comments on the blog and e-mail...it humbles us to know that so many people are praying!

I found out I was pregnant on December 10th. The first trimester of my pregnancy was appropriately miserable...I was tired, a little nauseous, and had many of the typical woes of early pregnancy. We visualized our son's heartbeat on sonogram on January 16th and it was a beautiful moment. I was overwhelmed by God's goodness, granting us three children...I know that so many women have to face multiple miscarriages in the process of creating their families...and here we were, with our third baby's heartbeat dancing on the screen. Incredible.

At 15 weeks, our friend Jan did a sonogram for us. Our baby was floating around in a fluid-filled world, happy as a clam. It was so much fun to watch our child dance and play.

My pregnancies with Connor and Kylee had been basically unremarkable. There was concern at some points that Connor might have been a bit small, which meant extra sonograms and non-stress tests throughout my pregnancy, but in the end, he was born just the right size. Other than that, both of our pregnancies were without incident and resulted in healthy, screaming babies in the delivery room. I reflect on hearing their first cries often, and grieve for this moment with our second son...I have to prepare myself for the fact that most likely, this great moment of the birth experience won't happen this time around.

Brandon and I were thrilled to be expecting. Since we have a son and a daughter, we really didn't care what the gender of this baby was. On March 31st, we went for our 20 week sonogram in anticipation of finding out who this little one was. We brought both the kids with us into the sonogram room. The sonographer put the transducer on my stomach and the first thing out of her mouth was "have you noticed that you're leaking any fluid?" I said "no". She kept going, and then said..."You have no fluid in here. They are probably going to have to do something really drastic." She stopped the scan. I was crying. The kids were just standing there, wondering what was happening. Brandon came over to me and held me. As he reached out to me, I saw the sonographer typing "limited scan due to no fluid" on the sonogram report. I fell apart.

We were whisked into our midwife's office. She explained to us that this was NOT good news. She did a physical exam and determined that my membranes hadn't ruptured. She said we needed to be evaluated by a perinatologist, and the fastest way to get this done was to admit me to the hospital. So off we went. I stayed overnight, and we had our first Level II sonogram the following morning. The good news was that the baby had both kidneys. The bad news is that we had NO measurable pockets of fluid. Not even one. We were told that most families in this situation choose to terminate the pregnancy.

They sent me home on bedrest. We went back a week later. Still no fluid. In the meantime, the bloodtest that I had drawn to detect chromosomal abnormalities came back positive for Trisomy 18 (a form of chromosomal abnormality that is believed to be incompatible with life). We elected to do a Chorionic Villus Sampling procedure to confirm the results of the blood test. Brandon held my hand as they poked the huge needle into my abdomen to get a sampling of our baby's placenta. We would wait 48 hours for the preliminary results. At this point, our medical advisors believed this is definitely what we were dealing with....a Trisomy 18 baby. We prepared ourselves.

The phone call came, and our baby's chromosomes were determined to be normal. Our medical providers were, in a word, stunned. We also found out in this same phone call that this little troublemaker is a boy, which is what Brandon had believed all along. We were ecstatic to find out we were having a son...we thought it would be special for Kylee, our middle child, to be the resident girl of the bunch. We knew Connor would love playing with a little brother. However, our excitement about this news was tempered by the grim reality of our situation. No matter what the cause, if there is no fluid, there can be no lung development. They had no great answers for us about the cause of the oligohydramnios.

We went in for one last Level II sonogram the next week. Still no fluid. Our perinatologist asked us if we wanted to terminate or continue on. She said that she didn't believe that it was worth doing any further sonography, because she has never, in her 22 years of practice, seen fluid reaccumulate at this stage of the pregnancy. In her opinion, our child is doomed.

I think that deep down, we both knew what our choice would be, but we left the office and talked about it. We decided to continue on. The road has been rough.

As you probably know from reading, we are Christians. We believe that our faith, above all else, should drive our decision-making. So it did, and we are continuing on. We are surrounded by an amazing church family and so many wonderful friends who are praying us through this. Our families have been a great support, too. The offers of prayers and help have come from so many...and we especially thank those of you who don't even know us for your prayers.

Don't get me wrong...there are moments when I am so angry at God I can't even speak. I have learned, through other experiences with loss, that we may never understand why this is happening to us....so we pray for strength to just make it through. So far, so good. I do have a little bit of hope that sustains me. I know that God has a perfect plan for this little one, and while I hope that he defies the odds and gets to stay with us, I also know that might not be what God has designed him for. And while I won't like it, I will surrender him to Jesus and know that he will be far more happy and healthy in heaven than we could ever hope to be here on earth.

I had a tough moment in the car yesterday when I realized that I may never get to have a birthday party for this baby boy. The tears started flowing instantly and that awful tightening in my chest began. I know that there will be many points at which things like that jump out and grab me, but in a way, I am glad to know that my grieving process has already begun...it is a necessary evil that we will face in the months to come, and with your prayers and support, I know that we will get through it.

"My peace I give to you. I do not give to you as the world gives. Do not let your hearts be troubled, and do not let them be afraid." John 14: 27

A Spoonful of Sugar...

Helps the medicine go down.

It certainly did today. Thank you so much for all of your prayers. Our appointment with the neonatologist went very well. Dr. Hall is a very kind, calm, trustworthy man. While the outlook hasn't changed, I feel as though he is very supportive of the choices we have made...and will take an honest and thorough look at our baby at delivery and then help guide us in the direction that we need to go. He emphasized several times throughout our meeting that although our son's life will be shorter than we'd ever want it to be, that doesn't mean that it isn't meaningful. He said that he and his staff will do everything they can to help make this as meaningful an experience as it can be for us...which we are truly grateful for.

He reassured us that our baby will look relatively normal...he said that babies that are in utero without fluid often appear to have been "shrink wrapped"...and while our little dude will probably stay curled up in the fetal position, as he has been in the womb, his face and limbs will not be scary to look at. His facial features will probably be a bit flattened, but this we can handle. This is a huge relief as some folks have told us that our baby will look very malformed.

He anticipates that, if things are as they appear to be on the sonograms, our son will live for no longer than a few hours. He did say that he will most likely be born alive. He also said that our baby will not experience any kind of pain while he is alive, and will just gradually stop breathing and go to heaven peacefully. Dr. Hall said that they will evaluate him when he is born, and if they determine that he, in fact, has no lung tissue, they will wrap him in a warm blanket and let us hold him and try to make the most of the short time he'll be with us on this earth. If they determine that there's enough lung tissue to make a "go" of it, he'll most likely be transported to Children's Mercy immediately. We haven't given up hope that maybe, God will grant us this miracle...but if not, we will make the most of the time we are given.

We are looking at late June for our delivery. This will put us around 32 weeks...long enough to be well past the point of viability, but early enough that hopefully some of our sanity will be left. Keep praying.

I hope this Doctor trains many medical students. His bedside manner (or chair-side manner in our case) is legendary. What a gift.

Tomorrow I may try to write and share a bit more of our story with you...I know that several of you are reading this and may not know how this all got started...and we want to invite you in to stay for awhile if you'd like. :)

Until then...

The Journey Continues...

Hello!

A trusted friend and colleague of mine suggested that I journal throughout this experience as a way to deal with the roller coaster of emotions that I feel on a daily basis....while I am too lazy to maintain a formal journal, I do agree with her that writing might be a good way for me to process things....so I will share how we are doing here, with so many of you who have been praying for us and for our son...

I asked Brandon in the car last night..."If someone else were where we were one month ago, what would your advice to them be?" He said "Ask LOTS of questions. Don't feel too afraid to ask ANYTHING. Doctors don't know everything and this is YOUR child." I agree. I said that I would also add to that "Be prepared to be looked at like you are COMPLETELY insane by every medical professional that you encounter."

I think that has been the most difficult part of this process for me. I am a member of the medical profession, and it is the members of my own profession that look at me as through I've sprouted an extra head when we say that we're choosing to continue on with this pregnancy. They tell me that they are "100% sure" that our son will not be able to survive outside my womb....as if that somehow means that his life is less precious than that of someone who is currently living on this earth....and as if we can be 100% certain about anything that deals with the human body. Yet at the same time, I know the medical truths...a baby who has no fluid around him is not going to have the "lung power" that he needs to breathe. It is a very difficult reconciliation to make....putting ourselves through these long months of waiting....only to tell our son good-bye....and yet, there is a part of both of us, praying for a miracle for this precious baby boy.

Many parents in our same position say that the time with their children, be it 2 minutes or 20 hours, is the most precious of their lives. We can't get ourselves there yet. The thought of laboring for hours only to leave the hospital with empty arms is, at this time, too much for me to bear. I spend a great deal of time thinking about the day that our son is born and how it will feel to look at him...and while I know God will give us everything we need in that moment, the pain is so sharp I can hardly breathe. I pray that in the coming weeks, God will prepare us in a way that we never wanted to be prepared...if that makes any sense.

We met with my obstetrician last week. I will have to see her once a month...mostly to monitor my health. They have said that they see no need to do any further sonograms or check the fetal heart rate at my appointments. I was mad when they said this...again, feeling like somehow our baby's life is completely insignficiant...but in my heart, I know the opposite to be true. So, I dust myself off, cry for about a day, and then move forward. Unfortunately, it is a routine we've come to know all too well in the past few weeks.

Tomorrow, we will meet with the neonatologist that will attend our delivery. Please say a prayer for us as I know this will be a difficult appointment, too. Doctors have said that babies that are delivered after 28 weeks are usually born alive, and that for this reason, we need to have a plan in place for what kind of interventions, if any, we want for our baby after he is born. Again, medical professionals look at us like we're crazy when we have said that we want him evaluated just to make SURE that there's nothing that can be done for him. So please pray that this neonatologist isn't just another person that will think we're nuts.

Later this week, we will meet with Patti Lewis at Alexandra's House, a perinatal hospice. I have spoken with her on the phone and think that she will be a wonderful resource for us. She has connected me with another Mom in the Kansas City area that lost a baby a year ago, and she and I have talked often, which has been good for me. As wonderful a resource as Alexandra's House will be, it is also dreadful to go to a HOSPICE for babies. Another moment when the nightmarish reality of our situation will set in.

Okay, so the positives...one of my colleagues and a very dear friend, Jan, has been doing sonograms for us on occasion. Not for anything at all medical, but just so we can watch our baby play. It is incredible. He kicks up a storm and has a profile that looks almost identical to Connor and Kylee's. He is growing at a relatively normal rate and has a strong heart rate. He likes to keep his hands up by his face. I feel him moving several times a day....what a miracle. I am now 24 weeks pregnant.

Connor and Kylee are doing well. I am sometimes overwhelmed with sheer emotion just from looking at them. They are so perfect and beautiful...and so loving and accepting of me even on the roughest of days. They, along with the prayers of others, are the life forces that keep me putting one foot in front of the other.

We thank you so much for all of your love and prayers. I ran across this quote today that I wanted to share with you: "Truly there is no hand so small that it cannot leave an imprint on the world".

Our son has already made an imprint on our lives and hearts, and we ask that you would continue to pray for him, and for us, as we move forward from here.