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)