Christmas Eve

I can remember in years past sitting in church on Christmas eve and the pastor briefly speaking to those who were hurting. I said a prayer for "those people" but I didn't have a clue how they felt.

Last week when family and friends around me were crying and hurting, I felt strong. I had the most time with our Charlie. I knew that despite how precious and perfect he was on the outside that on the inside not a single one of his organs worked properly.  I knew the moment he left this earth his body was completely healed and he was in the arms of my God. His God.

So I pulled it together and with Jared's help planned the perfect service and "celebration." I picked up the kids from school and went to the kindergarten Christmas party to show Andrew that Mommy was okay.  I made sure they wore the perfect Christmas clothes for each event.  I wrapped the presents and did the last minute shopping. We bought a cute and cuddly puppy and a fish for each kid. We went on a much needed date and talked about vacation plans. I sifted through sympathy, Christmas and flower cards.  I made spreadsheets of addresses, started the thank you notes and addressed birth/death announcements.

But today as I sit in the grocery store parking lot watching everyone enjoy the hustle and bustle of the holidays, I feel lost. I feel sad and alone. The flowers have wilted and some of the family has gone. My physical wounds are healing and his death certificate came in the mail. The hospital bills are arriving and the table of "Charlie memories" has been replaced with Christmas decorations.

I thought I could cheerfully enjoy the holidays. I mean I have 2 adorable and precious kids opening presents, singing Christmas carols and playing charades. Who wouldn't feel cheerful? But I'm just not. Sure I laugh and smile but inside I feel so broken. Why can't I have that sweet boy in my arms? Why didn't God heal his body? Why couldn't he let me keep him? I just miss him more than I could have ever imagined.

I guess just as my physical wounds will leave a scar so will the emotional ones. I just wonder what kind of scar I will be left with. One I rarely notice? One that is hidden from others? Or will it be a greater scar? My uncle who suffered an incredible loss said to, "Find our new normal." Will we? And when?

Today I will pray for those hurting with a new understanding. I will join them in trying to feel the joys of the holiday seasons.  But it is likely there will be more sorrow than joy this year.  I will try and remember the most important part of the season and praise God for his Son.

Because it is true. "A baby changes everything..."

A Celebration

There will be a private family graveside service for Charlie on Saturday. Following the service we welcome you to join us in a come and go celebration from 3-5 at our home, 3713 Hillsdale Drive, in Flower Mound.

Andrew is in full party planning mode for his brother. He has talked about the party for a long time and is focusing on a flower theme :) He reminded me last night a party isn't complete without friends so bring your little ones and help us all celebrate our sweet angel.

Many have asked about flowers for the service or a charity to donate in his name. The funeral home is Coker-Hawkins in Decatur. As far as donations, we used an incredible organization, Now I lay me down to sleep, for pictures after Charlie was born. I also was recently reminded that Charlie received more love in his short hour of life than many children receive in their entire lifetime. So, giving to your local food bank or favorite missions that provide assistance to children would mean a great deal to us.

And finally, many have requested to bring meals and so my dear friend set up a calendar. Below is the link.

http://supportplanner.caringbridge.org/planners/beckyhornbackmealplansignup


Thank you all for your support, prayers and encouragement. We are completely surrounded in love.

Broken Hearts

Charles Amos was born at 2:08pm weighing 4lbs 4oz. He went to be with our Lord at 3:08 after being loved on and held by amazing family and friends.  Our arms are empty and our hearts are broken but there is a peace we know comes from Him.

Letter From Daddy

Charlie,

I can't wait to hold you. You have taught me so much. To keep fighting when I feel I have no fight left. You are truly a gift from God and I look forward to having a long conversation with you someday no matter the outcome. I love you son, go in peace, you have earned it!

Love,
Daddy

A Letter

My dearest Charlie,

What a journey we have traveled together. Today is your big day! Happy Birthday, my love. You have taught me so much including how to be strong.  When I wanted to give up you kept on fighting.  If I worried you gave me a kick, punch or hiccup to reassure me. You proved so many doctors wrong and reminded us all how much we are not in control! It often felt like we were alone on this path but we were surrounded with so many who love us both. And He was always with us.

Wherever today leads, I have no regrets my sweet boy. You have changed my life forever. I pray you keep on fighting and continue to be the miracle I have begged and prayed for.  But, if you are tired Mommy will understand and your Father will hold you tight and love you until we are together again.

Rest up baby. We have a very big day ahead of us. I look forward to holding you in just a few short hours.

Love,
Mommy

Guess it is almost time to meet our sweet boy

Well not exactly what I had planned for this weekend but here we are.  My water broke this afternoon and we are now getting settled in at Harris Methodist in Fort Worth. There was some talk about delivering tonight but after being monitored for a few hours Charlie seems stable and I am not having any contractions. There is no sign of infection and they have started IV antibiotics. I will get a couple round of steroids (at my request) to give Charlie's lungs any extra help we can. Then on Monday all "my" doctors will be back and we will deliver. Of course at any sign of infection, contractions or distress we will have to go ahead and deliver.

Please don't worry or stress! Just let me do that ;) I am simply sharing because we have been blessed by so many of you over the last few months and I want to keep you informed AND ask for your prayers. I truly believe we made it this far because of those prayers.

Dear Lord I pray it is Your will that Charlie survive but whatever happens I know You will be with us. Please provide us Your peace. The one that passes all understanding. Surround our doctors and nurses with your wisdom and let them be kind.  Be with Andrew and Mckinley, keep them safe and worry-free. In Jesus name I pray, Amen.

Sweet Charlie

When I told Andrew that Charlotte was a boy he screamed, "You lied to me!"  Without thinking I said, "They lied to me!"  But with time the shock has somewhat worn off for all of us and he keeps reminding me that the boys will outnumber the girls and that his name IS Charlie.  I'm not up for "lying" to him again so...Charles it is!

So it is official, his name is Charles "free man" Amos "to carry; borne by God"  I love the name Amos.  It seems to embody the choice we made to carry him regardless of the prognosis and a reminder that he is truly borne by God.  There are a lot of details in this story but our main theme has to be trusting and believing in God.

The other day Jared said I was Facebook picture happy. Ha!  He is right and when I really thought about it I realized it is because I want to show that we are still living, still breathing and having some fun along the way.  Thanksgiving break is a great example.  It was a wonderful yet exhausting time.  We got to see almost all of our extended family and there were plenty of fun activities along the way.  Two yummy Thanksgiving dinners, watching Baylor beat Tech at Cowboys stadium, going to the Gaylord for ICE and the snow tubes and most importantly lots of family time.  Someday, regardless of the final outcome of our journey, when I reread these posts I want to remember that we had a lot of fun with Charlie in between the tears and pain.

As far as details, Charlie is doing about the same.  The fluid levels are low but stabilized.  He weighed 2lbs 10oz at 32 weeks.  They only measure every 3 weeks even though I have a weekly sonogram.  Monday was 33 weeks and there was still completely normal blood flow through the umbilical cord and everything looked about the same.  At 35 weeks they will measure again and then the team of doctors will discuss the best options.  We want to wait at least 3 more weeks and hopefully 6.  But if he isn't growing well at 35 weeks they might choose to deliver.  It's all a balancing act and waiting game.

Dr. Bleich did mention that Braxton Hicks contractions are completely normal but in situation with low fluid they often put pressure on the umbilical cord limiting the blood flow and slowing the baby's heart rate.  I took this as a sign to slow myself down :)  I cut back or eliminated all the activities I could and I am just trying to remind myself that our main priority is giving Charlie the best possible chance at a miracle.  Plus I seem to be making a lot of mistakes lately like sleeping through kindergarten pickup, thinking preschool started at 9:30 instead of 9 and missing my dentist appointment...twice!  I am trying to take my dear friend Jennifer's advice and give myself some grace but I am not usually this absent minded and it feels a little scary.  Wonder if this is what it is like when you get older?  Do you even realize it?  I'm hoping I won't care as much by then and just ditch the details and enjoy life!!

If I never knew you

If I never felt this love

I would have no inkling of 

How precious life can be

If I never held you

I would never have a clue

How at last I'd find in you

The missing part of me

Yep you guessed it!  The kiddos have been watching Pocahantas in the car for the last few MONTHS! But I do love this song.

Charlotte is a Boy!

 

 

 

 

There really are no words.  I can only say that this latest development has rocked me to the core.  It took all I had to focus on a baby girl and enjoy time with her knowing I am not likely to ever bring her home or see her grow up.  To find the perfect name, to make the perfect blanket, to pick out the perfect dress...only to find out that "she" is a "he." 

 

It wasn't a mistake or that he was hiding, it was simply because it wasn't important to the doctors surrounding me.  They see a fetus and not a daughter or a son.  Do I blame them?  Yes!  Do I somewhat understand? I guess.  It was clear on multiple genetic tests dating back to Aug 1.  Yep almost 4 months ago!!  Note to self: request a copy of all test results/paperwork going forward.

 

How do I trust that their diagnosis on his heart, lungs, kidneys and spine are correct when they can't even see that "she" is a "he".

 

The answer is I don't.  I put my trust in my Lord.  Is that easy for me right now? NO!  I am so upset that I feel like I can't see which way is up.  So there it is.  The honest and raw truth. 

 

 

I called my therapist today, the one I am able to see only because of the kindness and generosity of an amazing and dear woman.  She said all I can do today is pray.  Really lady?  That's the best that you can come up with?! Then she read me the entry of "Jesus Calling" for today.  As she read, there was a very strange peace that washed over me as I sat in the Sonic parking lot.  For those of you that REALLY know me, I am often a cynic. The typical things people say like "God has a plan or His ways are best or He only gives special babies to special people."  Do nothing for me.  Except really tick me off.  Don't get me wrong they are true...just annoying at times ;) But as I sat and let everything bubble to the top and let God take it, I felt better.  In less than 30 minutes, all the bitterness, anger and sadness were back and I sat again with Him and let it bubble and then it was gone.  I guess that's how I will make it through.  It won't be pretty but I won't let this complicated and overwhelmingly crappy situation make me a bitter person.  I refuse to let it take over and destroy my precious marriage and family. 

 

I DO NOT have the strength for this and I wish I could just be checked into the looney bin!! :)  But, since I doubt that is an option I will just let Him be my strength.  Please know this doesn't come naturally to me but there is no other way.

 

Dear Lord, please pull me from the ocean where I am drowning and put my feet back on solid ground as soon as possible.  And in the meantime, be my lifeboat as I am forced to ride these monstrous waves.  Let me always remember to put MY oxygen mask on first so that I will then be able to support all 3 of my children, my husband, family and friends.  God remind me to give thanks for all the amazing blessings in my life.  I know you are beside me and I thank you and love you for it.  Amen.



 

Grief and Joy

I recently read Angie Smith's book I Will Carry You.  I doubt it was a coincidence that Angie spoke at the Women of Faith conference that so many women I know attended this year. Nor do I believe I accidentally stumbled upon the email at 2 am from a cousin of a neighbor who recently lost a child, that led me to read the book.  I think it was God's perfect timing.  The book was recommended by more people than I can remember but I don't believe I was "ready" to read it until that night.  If I was a writer I probably could have written 90% of the book because it expresses much of what I think and feel.  But the other 10% has changed my mindset over the last few weeks. The book has a chapter for Dads and one for friends trying to support a Mom who may lose a child or has lost one and information on helping children grieve.  While it was an extremely difficult read, the book was truly a blessing for me. One of the things Angie speaks about is how grief and joy truly go hand in hand in this situation. 

Last weekend with the help and generosity of loving family Jared and I found the best place for Charlotte to be laid to rest should she pass.  A beautiful spot next to Jared's mother, Charlotte's grandmother, in Paradise, Tx.  We visited the funeral home and I will be forever grateful for the man who helped us though the details.  As we were leaving he said, "I pray that I will be able to shred this folder in January."  I simply thought that is my prayer too new friend. My prayer too.  Next week we will finish up by talking to the minister at our church about the upcoming months.

On Friday, Jared and I saw Dr. Bleich to see how much Charlotte had grown in the last 3 weeks.  She is still tiny but so strong!  She weighs just 1lb 11oz and still measures several weeks behind.  But Dr Bleich was amazed to see the best picture of her kidney yet.  It is still echogenic and small but she saw it AND there was urine in her bladder!!!  She has even more amniotic fluid this time.  It measured 6 and normal is 5-20.  So technically she has normal fluid levels.  Ha!  You show 'em Charlotte :)  Who knew urine could cause so much joy?! 

After that appointment, we went over to Cook's for a followup echo cardiogram.  Her heart condition is still the same.  The most pressing issue with her heart when she is born is that the veins leaving her lungs do not connect back to the heart in the right place.  She thinks they connect to the vena cava but she isn't 100% positive.  In order to treat her heart and spine issues, Charlotte has to come out with strong healthy lungs.  The problem is that her lungs aren't likely to develop because of the low fluid levels and from a vascular standpoint they don't function correctly either.  So a miracle is needed. 

Dr. Roten is truly amazing.  She is the first one to give me some peace over what to expect when Charlotte is born.  I have read a lot of blogs and books in which the women seem to never have to make choices on how far to intervene in order to care for their child.  I don't know if that is because they have confirmed genetic disorders or if the women just don't write about it.  It seems like their babies are simply handed to them and they love them and hold them until they pass.  For us, at every turn we are asked what we want to do and I am here to tell you that as a mother making these decisions are virtually impossible.  So, I try to remember to pray and let God guide us.

Today after writing this post I decided I am done apologizing and downplaying the hope I have for Charlotte.  Praying and believing in a miracle that will save her life is my job as her Mom. If she is going to keep on fighting then so will I.  Guarding myself from speaking about her or spending time with her or hoping for her life to be spared will never minimize the pain of losing her.  However, it is something I can imagine I will severely regret.  She is already our daughter, sister, granddaughter and great-granddaughter and oh how we love her! 

If you are a specific prayer like I am, here is a list of what Charlotte needs in order to have a fighting chance at survival. She needs her kidney to keep functioning and her fluid levels to increase. She needs her lungs to grow and be strong. The veins leading away from her lungs and connecting incorrectly are currently only handling 15% of the blood flow that they will need to handle the moment she takes her first breath. These veins have to stay strong and unblocked both in utero and after she is born. 

Someone recently reminded me that my God is also Charlotte's God.  He will protect her and help us to make the right decisions.  She is His child just as I am His.

We finished Friday off with a great parent teacher conference for Andrew and big news for Jared. After scoring #1 on the Captain's test in February he has patiently awaited the announcement of a captain's retirement, which came on Friday. So in the next few weeks I will officially be a Captain's wife :) I don't have the words to express how proud of him I am and how much I love and appreciate how well he does everything from caring for his family to being a firefighter...and everything in between. Congrats babe!! Oh and Happy Anniversary. It's been a fun 9 years!

Just as this post bounces from grief to joy, so do the days of our lives.  So much to be happy and thankful for and so much to grieve and mourn.  Feels a little like life on steroids :) 

Be Still My Friends

Enjoying the gorgeous weather with just Charlotte this afternoon.  Sun, wind, quiet and old fashioned hymns are providing some much needed rest for my mind, heart and soul.  May you each find a moment to be still with Him today. 

Because He lives I can face tomorrow...

'Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand.’ Isaiah 41:10

The Hiccups

Last weeks appointment was pretty basic. Dr. Bleich did let me know all the things that showed Charlotte is a fighter. For example, she is moving quite a bit, she is growing, her heart seems strong, she is practicing breathing, her hands are relaxed and there was actually more amniotic fluid than the week before.  She weighs 1lb 4oz :) All the anomalies are still present but for now she is fighting.  It will still take a miracle for her to survive...but then again it is a miracle that she is still with us!

No appointment this week. I needed a mental break :) So we will see Dr. Bleich next Friday, the LAST week of our 2nd trimester!

Sometimes it is hard to update as I am sure you can imagine. But I had to share today because...Charlotte has the hiccups!!! Something I wasn't sure I would ever feel.  I am completely grateful to God for answering my strange and small prayer for this gift.

One last tidbit. Sometimes we all feel sad at the passing of time.  Whether it is the start of a new school year, a BIG birthday, packing up the baby gear, selling the crib, gray hair or having to trim nose/ear hairs ;) But I think it is important to remember  to count these as blessings.  Because somewhere there is a baby that didn't get to use the crib, a child that didn't grow out of their clothes, a teenager that didn't finish high school and a parent or grandparent that left us too soon and missed the milestones.  So next time instead of being sad I will take joy in all the wonderful memories I have been blessed to create.

A Roller Coaster Ride

I shouldn't be sitting on the front porch writing and listening to rain. I should be at church with my family. I wish I could have a do over of this morning but since I can't I will pray for healing, forgiveness and the strength to do better next time.

This week started with the birth of our nephew, Parker. Precious and perfect in every way. A very joyous occassion!! Then there was the amazing moment of seeing my belly move as Charlotte kicked and played. Since Jared was at work and it was after 10 I turned to the world of Facebook to share my happy news. I assume the 60+ "likes" means a few others could relate to my joy :)

The week ended Friday with devasting although somewhat expected news. It seems Charlotte's kidney is no longer working. There is essentially no amniotic fluid left. Although I will pray for a miracle it is very unlikely she will survive. If we have even a few precious minutes or hours with her I will be forever grateful.

We have done all we can do at this point to prepare for her arrival. There is a team of neonatalogist that meet weekly to discuss patients and we are on that list. It gives me comfort to know that in case of a miracle they will be able to provide her all the support and care she will need. I will see my OB once a week for now.  Mostly just for my peace of mind.

Jared and I plan on spending a short time in the coming weeks preparing for her passing. We have a list of questions and requests from certain family and friends we plan to address.

And then I will do my best to let it all go and enjoy each moment with her and the holidays with my family.

The above are my plans and prayers but I know it won't be easy. I am not strong as many have said.  I am just a broken and hurting Mom trying to do the very best I can but often falling short.  And I am angry at God and sometimes at whatever poor soul crosses my path. I have faith that He is carrying me and my family but I just can't always see or feel it.  I currently don't like His ways and think mine would be much better ;)

I've been told that every emotion and feeling is important to experience. It is just when we dwell too long on one that we tend to struggle.  I think that makes sense. I have decided life is just a balancing act and it is definitely easier to balance on the fairly steady ground I have lived most of my life rather than the current roller coaster that has become our life.

Much love to each of you! And a very special hug and prayer to those also traveling a tough journey.

The "Mom" of the NICU

Today we had an appointment with the neonatologist.  I wasn't aware of this appointment until my new OB's office called last week to say they had scheduled it.  The mother of one of my closest friends told me earlier in the week to get an appointment with this neonatologist, Dr. Weinman.  She said she was the "Mom" of the NICU :) So as much as I dreaded meeting a new doctor it seemed like if two people had encouraged an appointment with her then it was a good idea.

She met us at the elevator and we went to the parent consultation room.  A few bottles of water and a big box of tissues were on the table in front of us :)

She started having us recap in our own words what we understood (although it was clear she was completely up to date on our situation.)  Shortly into our conversation she asked if we had named the baby, afterwards she always referred to her as Charlotte.  She was the very first doctor/nurse to do so.  A wide range of topics were discussed.  We went through what would happen if she is stillborn or passes shortly after birth.  I will spare you the details because I believe this is only information you need to hear if you are facing these possibilities.  Just understand that knowing there are teams of people to support us was comforting.

Next we discussed what to expect if she survives and is being cared for in the NICU.  She made sure we understood that we were in charge of the decisions for Charlotte's care.  The neonatologist team will be the ones making sure this happens while overseeing all the specialists that will be around Charlotte.  She requested only one decision be made today.  When Charlotte is born, if she is struggling to breathe, will we allow her to be put on a ventilator or CPAP in order to assist her until we can determine the strength of her lungs, kidneys etc.?  Jared and I both agreed we should give her a chance until we know as much as possible about her condition once she is born.  They even gave us a notecard to give to the hospital to make sure they know we have a plan on file.  They call it the Wee Care program :)  She spoke a lot about Andrew and Mckinley.  Dr. Weinman explained how they will make sure to include especially Andrew in meeting and holding his new sister.  And how if Charlotte doesn't survive they have many free resources to help children grieve and cope.  It seemed like this was very encouraging to Jared who lost his Mother when he was 5 and still has very vivid memories of her death.

We took a tour of Labor and Delivery and the NICU.  We saw precious babies being carried for by loving nurses.  I would have expected that seeing a 2.5 lb baby on a ventilator would be upsetting but truthfully I saw a beautiful precious miracle. It was a comfort knowing we were in the right place with the right people to care for our daughter.

Even though much of the content of this dreaded meeting was beyond upsetting and I am completely drained, it was delivered in a kind and personal way which made it, in a very strange way, a blessing.

I don't have any inspiring bible verses or words of wisdom tonight so feel free to comment with yours :)  I do want to thank Gigi (my mom) for coming to stay with the kids this afternoon, Jennifer for picking them both up from school and Miss Dawn for keeping Mckinley last week.  Knowing that they were so well cared for made it easy for me to focus on Charlotte.  I am also grateful to my old OB, Dr. Lungren and her nurses/office staff, who graciously took me into their office this morning without an appointment to talk me through a few things, offer some hugs and a much needed prescription.  And last but not least I am thankful to Jared.  Although we handle our grief and stress in very different ways...think Mars and Venus ;)  I know I am not alone on this journey and that means everything.

Oh and one more VERY important item.  If you ever end up at Harris Methodist make sure and stop by the popcorn guy.  Yummy! Best $1 I have spent in a while :)

9/11

Yesterday's much anticipated appointment came and went.  I can't say that I learned a lot of useful information or that I loved the doctor.  She is back to being concerned about her kidneys because there is very little amniotic fluid.  Her plan is to take a look again in 2 weeks before we move forward with visiting any other specialists.  Charlotte measures small which is typical of a baby with so many anomalies.  The definition of anomaly is a deviation from the common rule, type, arrangement, or form.  I decided I like this word better than defect ;)  But she was in there kicking away with her sweet face all squished up.  I just pray Charlotte doesn't feel any pain as she struggles.

I doubt any doctor's office could do exactly the right thing to keep a patient in my situation from getting upset.  However, bringing up the subject of terminating the pregnancy for the thousandth time, and trying to give me samples of formula and a new mom present after telling me how concerned they are didn't help my mental state.

As the feelings of frustration and anger from yesterday's appointment give way to sadness and confusion, I am reminded of how I felt 11 years ago.  Now please don't misunderstand me as I am in no way comparing this journey to the tragedy of 9/11 just simply stating I have some of the same feelings.  I remember feeling confused and scared.  Family and friends that typically gave me strength were struggling as much as I was.  Ironically it was Peter Jennings who reached out from the television telling me that as awful as the day was our country would be okay.  A blessing maybe? I wish he was here today to tell me I would be ok :)

As Charlotte's mom there is no reason for me that will ever be good enough for her to be so sick.  I know God does have a reason but because we don't think the same I will never understand.  Maybe our journey will help another family in the future or maybe it is preparation for my family's life work.  But I would trade it all in a heartbeat if I could make my sweet baby girl healthy.

Today I will mourn for all that our country lost 11 years ago.  I will remember that I am not the only one in the world struggling.  I will pray for all those who lost loved ones that day and after.  I will pray for all our military and first responders.  Especially the sailors and firefighters who are near and dear to my heart :)  I will feel a little sorry for myself and my family but not so much that I lose sight of others.  I will be a little angry at God but not enough to cause my faith to waiver.

Isaiah 55:8-9

⁸ “For my thoughts are not your thoughts,
    neither are your ways my ways,”
declares the Lord.
⁹ “As the heavens are higher than the earth,
    so are my ways higher than your ways
    and my thoughts than your thoughts.

http://www.youtube.com/watch?v=4mmgV6mPvb0

New Doctors

Wow it's been a week already?!  Turns out is wasn't as easy as I thought to find a new OB half way through a high risk pregnancy with a sick baby.  But after a few breakdowns, a lot of phone calls and one personal visit, I have an appointment Monday with a new OB.  Dr. Bleich is not only an OB but also a maternal fetal medicine doctor so it is nice that I am combining two doctors.  She delivers at Harris Methodist which is connected to Cook's by a skybridge.  I was slightly confused when I said I would deliver at Cook's...since they don't deliver babies ;)

Dr. Aimee, our pediatrician, has us set up with the neurology team and I am waiting on a call back from  Dr. Roberts office for an appointment time.

So that's where we are.  If anyone reading this knows good stuff about any of these doctors, please let me know!  So far I just know they come highly recommended and when I "googled" them they have kind faces :)

On a personal note, I have learned a lot over the last few weeks.  Not just about medicine, birth defects, hospitals, doctors etc. But also about people.  I know that next time I know someone in a tight spot and I don't know what to say, I will say something.  Is it awkward? Yes!  But saying something "wrong" is always better than saying nothing at all.  At least in my opinion.  I have also learned how important it is to step outside of yourself and family and notice what is happening around you.  It gives you so much more perspective on your own situation.

I say this not as a lecture to anyone reading but to myself.  I have never been in a situation where anonymous cards came in the mail or meals were delivered or all my long time friends were there to lend a helping hand or ear.  Sometimes I think "Wow, my situation must really stink!" but mostly I am just thankful.  So even now in the middle of this chaos I am trying to notice others around me struggling so maybe I can send a card or lend a hand.

The quote "Be kinder than necessary, for everyone you meet is fighting some kind of battle" has a whole new meaning.  I would rather give everyone the benefit of the doubt.  Even the crazy Dad at carpool that parks in the line and gets out ;)

“Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave.” (Ephesians 4:32)

A strong girl despite a weak heart

Quick update from my phone as we head out of town for the holiday. Wishing I could say she has a perfect heart but that's not the case. It's pretty hard to sum up a 3 hour appointment in a few sentences but here goes. Charlotte has an AV canal defect and possibly total anomalous pulmonary venous connection. Basically a big hole in the center of her heart and the veins leading back to the heart from the lungs aren't connected to the left atrium like they should be. In an ideal situation, she will have surgery at 4 months to fix the defects. However a number of complications could cause too much stress on her heart prior to Jan or when she is born and she would not survive. There is also a possibility that the complications we learned about will cause her heart to take priority and the surgeons would have to figure out how to perform the surgery before the opening in her back is closed. Clearly an issue since heart surgery requires her to lay on her back. I am trying my best to plan ahead and gain knowledge but take one day at a time. Much easier said than done. Definitely not the outcome I was praying for but I can't let something in the past cause me to stumble. A very long road is ahead. Thanks for all the prayers. He is certainly the reason I am not curled up in the fetal position...at least for now ;)

Rockstar Pediatrician

Dr. Aimee is exactly what we needed.  An advocate, who is kind, thoughtful, very smart and on top of things and who is willing to help even though Charlotte won't technically be her patient for months.    After I left her a message she called me from home on Tuesday and took over.  She consulted with the maternal fetal medicine Dr. and got all the information.  Turns out there is some debate on whether Charlotte truly has a heart defect and that is why they want us to see a cardiologist first.  If it turns out her heart is fine, they want to try and get us into a program that would do the in utero surgery.  Just the thought of this surgery sends me over the edge and into heart palpitations so I am not letting my mind go there yet.

Dr. Aimee called the cardiologist at Cook's but they didn't have appointments until October.  Evidently she didn't let that stop her and after two days of begging and pleading they found an appointment for us tomorrow!

To sum it up it looks like we are going to deliver at Cook Children's Hospital in Fort Worth.  We have an appointment with a pediatric cardiologist there and I am still working on getting set up with a new OB.

This week has been amazing and completely overwhelming.  Charlotte's big brother started kindergarten which is a Spanish immersion program so every other day he has no idea what his teacher is saying!  Her sister met her new preschool teacher and will start there next week. And to top it off the downstairs AC broke.  Lucky for me both the kids seem to love school and are adjusting well.  Plus, Jared is incredibly handy and with the help of google replaced the blower saving us more than I care to think about.

There have been multiple times I feel like I am making a mistake or choosing the wrong path and I start to panic. But I am going to try and remember this piece of advice from my amazing sister-in-law, Holly.  She said, "You just jump in with both feet and pray for strength to overcome what comes your way!"

I once heard my friend Rebecca pray, "God I am asking for the big one, the miracle that only you can deliver." So my prayer today is God let Charlotte's heart be healthy.  If his will supersedes mine then so be it, but I won't be afraid to ask :)

Matthew 18:19-20

¹⁹ “Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. ²⁰ For where two or three gather in my name, there am I with them.”

Microarray Results

The microarray came back normal.  What does this mean?  Um, well, you see...I'm not really sure!  The Dr.'s statement was that as far as our current technology goes  (which is pretty great, by the way) Charlotte is a chromosomally normal child.  That is good I guess.  It does leave us with the question of how could so much have gone wrong?  And as her mother I think, what the heck did I eat, drink or do that would cause this.  But, in the end there are never answers to the why's and that leads us back to trusting in God.

The next step is to decide where we will deliver.  There are 3 hospitals in the DFW area that can do the surgery for Spina Bifida.  Our current pediatrician, who we LOVE, is a part of Cook's Children so we are leaning towards that hospital.  Several people have mentioned the in utero procedure for SB.  It started as a trial at CHOP (Children's Hospital of Philadelphia) and is now out of trial and at several hospitals in other states.  There is some conflicting data on the risks and benefits and on top of that several doctors have told us that Charlotte is not a good candidate for this surgery.  After some prayer, I agree.  I wish I could fix her now but I believe her heart needs more time to develop and possibly correct itself so she will be strong enough to endure the SB surgery.

Next we will see the pediatric cardiologist for our hospital to confirm the heart defect and find out more details.  Then we will meet with the neurological team that will perform the SB surgery.  We know that the opening is in the lumbar sacral region but they will provide more specifics.  FYI The lower on the spine the less neurological damage.  Plus, I will need a new OB because mine delivers only at Lewisville and Flower Mound.

Whew! We ask that you pray that we are led to the right doctors and hospital for Charlotte and for continued strength and endurance as new struggles arise.  And on a side note pray for one of our doctors and her family as her father passed away last week.

Blessings

Sunday at church was the blessing of the backpacks.  Now coming from the Baptist church this was a little odd to me but turns out it was a chance to pray over the students, teachers, administrators and parents before the school year and that is just fine by me.  Afterwards, our pastor spoke about blessings.  Let me be very honest.  I have always been a bit confused on this topic.  There are many that simply replace thankful with blessed or say "I'm so blessed because..." insert bragging moment here and then of course there are the official blessings used in church.  And don't forget the southern woman who uses "Bless your/her heart!"  Don't get me started on what I believe many women actually mean when they use this phrase ;)  And last but most on my mind is when you are in a situation that seems very dim and someone says in time this will be a wonderful blessing.  

How about this one?  A blessing is when Heaven reaches down to touch the earth and in those small moments we see His hand.  Not our hand but His.  Nice work Pastor John.  I finally got it!

Obviously we see His hand in EVERY child that is born.  Truly one of the biggest blessings.  But, lately I have seen His hand in small circumstances each day.  A text or call from friend, a dinner delivered, our church staff, a generous offer for help, a beautiful bouquet of flowers and so much more.  Just about the time I think I can't move forward any longer...BAM!...a blessing, His hand, Heaven reaching down to earth.  So thank you to everyone who is loving and praying and helping us.  And thank you to those who we haven't seen in years or saw yesterday who took the time to comment on our "big" news. He is clearly using you to bless. 

Much love,

Becky

The Good and the Bad

Today the doctor told us he sees Charlotte's defects everyday just never in one baby.  It is very unique to have so many different issues but no major chromosomal problems. He confirmed that Charlotte has Spina Bifida.  The sonogram also showed she has one cystic nonfunctioning kidney but the other one seems to be doing well.  This was clear by a full bladder and plenty of amniotic fluid.  Her heart does have a hole but we will learn more about this from a pediatric cardiologist in the future.  He said her foot may or may not be clubbed and the cyst is still large and present.

So because it's unlikely we will have an overall syndrome or disease that will provide a prognosis I asked the Dr. to talk about each issue as if it was the only one.  He said heart defects are able to be corrected.  Sometimes they get better through pregnancy, some have surgery immediately, some years later and still some never require surgery.  So it's a wait and see.

The kidneys are what they are for now.  He said you really only need 10% of one kidney in order to live.  Who knew?!

A club foot (if she has it) is correctable.  Did you know that "NFL Cornerback Charles Woodson was born with severely clubbed feet and went on to win the Heisman Award at the University of Michigan, played in Super Bowl XXXVII with the Oakland Raiders and wonSuper Bowl XLV with the Green Bay Packers. The figure-skater Kristi Yamaguchi was born with a clubfoot, and went on to win gold medals at both the 1992 Winter Olympics and World Championships. The soccer star Mia Hamm was born with the condition and won Gold twice with team USA in the 1996 Olympics and in the 2004 Olympics."  I stole that from Wikipedia :)

The cysts are just a marker for chromosomal disorders and will likely disappear and even if they don't they won't cause issues.

And the big one.  Spina Bifida.  It is a neural tube defect and means that a portion of her lower spine didn't close and is now exposed to the amniotic fluid.  She will have surgery immediately following her birth to close the opening.  The spectrum of SB is huge.  Some people walk, others require braces and or crutches and still others are wheelchair bound.  Many times they struggle with incontinence but over time most can gain control. SB kiddos also retain fluid in their brain and often require surgery to place a shunt that drains the fluid.  95% of SB kids have average to above average IQs.  

So that's my best summary.  Another thing to point out is that because she is one of a kind it is likely that there are other issues that may not show up until later or after she is born.  We really don't have good answers and that alone is frustrating and difficult.

We have gone from grieving the loss of our daughter to struggling to imagine ourselves with a very special needs child.  Lots of tears, anger, frustration, stress, grief...basically if it's an emotion we have had it.  And Jared and I are often on opposite sides of the spectrum ;)

So that's where we are.  I hope I left you with more answers than questions but considering the situation I know it's likely the questions are more abundant!!  Our next step is waiting for the results from the microarray.

Still no answers but we have a name!

Previous email from me:

I thought I would send an update on our sweet baby girl.  In case you haven't heard we named her Charlotte (small strong woman) Grace (having God's favor; a gift)  Forgive me if I repeat information you already know.  

On August 3rd we had an amnio after a poor sonogram on the 2nd.  The next Monday the FISH (quick results) showed normal chromosomes for 13, 18, 21 and the sex chromosomes.  The Dr. has told us to expect these results to come back clear.  On Aug 14th when we were in Destin the Dr. called and said that the final amnio results were in and the chromosomes were normal but there were elevated levels of alpha fetoprotein and acetylcholinesterase was present.  These two findings point towards spina bifida.  But because not all the sonogram findings (kidney and heart issues) are indicative of SB she suggested doing a microarray.  This is a test they will perform on the amnio fluid they have already collected.  It will look at each chromosome in high level detail to see if there is a deletion, translocation etc. and will take two more weeks so maybe by the end of this week or next week we will have the results.

Today at 2:45 we have an appointment with another maternal fetal medicine specialist for a detailed sonogram.  He will look for the SB defect and check all the other issues.  Now that we are 19 weeks they should be able to see more than our sonogram almost 3 weeks ago.  

So probably more details than you wanted but it is how I process so thanks for letting me share.  Please know that we love Charlotte sick or not with all our hearts.  And we will do anything we can to gain all the information we can to find the right doctors to help her if that is at all possible.  But if God choses to take her home we will always remember and love her as our precious daughter.  

So pray specifically for some answers and that if they don't come we will find peace in that situation as well.  

Thanks again for letting me share and for being so supportive.

Negative Test! But...

Another prior email from Jared:

After a terrifying week and lots of prayer, the test came back negative for Trisomy 13, 18 and 21 and we were elated.

  

This would be short lived however.

After returning to the specialist today for a follow up (16 weeks) and another sonogram, we have very sad news to report.  The baby shows abnormal brain development with cysts, little to no kidney function, a hole in the heart, and some other complications. 

Becky will be having an amniocentesis tomorrow morning to conduct further testing to try and establish a final prognosis which can take up to two weeks, but most likely the findings will remain the same, incompatible with life.  Needless to say we are completely devastated (again) and going through a lot of emotions right now. I will be taking some time off of work to care for Becky and the kids.   We will have some difficult times ahead of us as we wait for more information.  Prayers are certainly appreciated.

The first sign of a problem

A previous email from Jared:

Up to this point we thought we had a healthy third addition to our family after all of the miscarriages we have been through.  Becky went in for blood work last week and on Monday the Dr. called and said we had "markers" for Trisomy 18, which is a chromosome abnormality.  Trisomy 21 is Down's syndrome for some comparison. Unlike Trisomy 21, 18 is fatal.  The infants usually survive until delivery but die within the first few weeks to months. Miscarriages and stillborns can occur also. We went to the maternal specialist today and had another sonogram.  The Dr. identified 2 markers (kidneys and brain cysts) which raise suspicions or Trisomy 18. Basically, the baby gets an 18 chromosome from both parents, but the abnormality is when the baby has 3 (Tri) 18 chromosomes.  Needless to say, we are devastated.  The sonogram is not conclusive at 14 weeks, so they drew some blood from Becky and are sending it to California for chromosomal mapping which will compare Becky's DNA to the baby's DNA and identify whether or not the extra chromosome is present.

They use several different markers and come up with a "risk" factor. Ours was a 1 in 27 chance (97%) that the baby was fine based on blood work and before the songram. Now, we just aren't sure what the odds are. To me, it's 50/50 since the baby either has the abnormality or doesn't.   The blood test takes 1-2 weeks and has a 99% accuracy.  So the results will basically tell us whether our baby will live or die.  Becky is 14 weeks and the baby looks completely normal on the sono other than the 2 markers.

With all that said, we could really use some prayers that this blood test will come back negative for Trisomy 18.

In the Beginning

On May 4th I found out I was pregnant.  I was cautiously excited.  This was the 7th time over the course of 6 years I had a positive test and as you know we only have 2 children.  So twice between Andrew and Mckinley and twice after I had miscarried.  The next 12 weeks would go by very slowly.  My doctor let me go in weekly for a sonogram to ease my mind and confirm there was still a heartbeat.  Over time I was more and more confident and there was even a week or two where I nested and moved Mckinley upstairs to her big girl room.  We had the first trimester screening which included blood work and a sonogram.  Mostly because I thought there was a small chance they would be able to tell us the sex of the baby and I was anxious! She guessed it was a girl :)

So off we went to a family reunion in New Mexico.  Finally the morning sickness was gone and we were in the 2nd trimester.

And then we received the first of many "calls"...