PINK SILK CURTAINS

Yesterday was a great day.  It was amazing as SWEET CHARLOTTE was placed in my arms again and a memory which I have kept reliving ever since.

I thought we'd crossed over another BIG hurdle when she came off the ventilator, but it ended up being short-lived when she was re-intubated last night.  A minor set back for Charlotte because she's just not strong enough to breathe on her own quite yet, but a major one for Mommy.  Just because my brain understands doesn't mean that my heart does.  Emotionally, it's been a harder day for that fact alone.  And then I saw the neurologist.

He came because Charlotte's weekly head ultrasound showed a different picture than last week's.  Enough so, that Dr. Neurologist paid us a visit.  Her ventricles are enlarged because they are not draining effectively into the spinal column.  If enough fluid accumulates, then pressure builds to an unsafe amount.  Obviously this doesn't make for a cohesive environment and if it doesn't resolve on its own, she will require surgery to fix - a shunt is placed in her brain to drain the fluid.  We will know more tomorrow and are looking at having another scan later this week before we know if she needs surgery or not.  We pray for SUPERNATURAL HEALING.

Also still on our PRAYER PLATE..... We pray that the leaky thoracic duct resolves with medication and her 'nothing by mouth' diet.  If not, she will require surgery to ligate the duct.  We also pray that the swelling in her chest decreases substantially and supernaturally!  If not, then a catheter will be surgically placed to drain it.  Believe it or not, it's called a pig tail catheter.  Leave it to the medical community to glamorize it. 

Sometimes I feel like although I may seem unruffled, I'm paddling like crazy underneath.  And though I may feel this way, I know that GOD is right there beside me.  And then I take a breath again.  And choke back tears.  I trust you, God.  I trust you with my whole HEART...and Charlotte's too.  

LOVE, CHARLOTTE

THANK GOODNESS for being early!  We arrived at 645 this morning to spend time with little miss pre surgery and at 7, the OR team was raring to go so we left.  Charlotte was awake and as we held hands, I almost couldn't let go.  She has the tiniest little girl hands which kept squeezing mine.  I say, "Mommy squeeze, Baby squeeze" a thousand times a day from my bedside post usually.  It's never too early to start teaching, right?  Fortunately, she's stronger than Mommy is and as we left each other I know she was telling me that she'll be fine.  

Overnight she made us a Valentine - my favorite ever.  I'm so happy because this is her first footprint that I have to hold.  I know there will be many more which we make together, alongside her big brother, but today's will be my favorite.

My little Charlotte had a good night of rest, is tanked up, on the lowest flow possible on the ecmo machine and is ready to get this show on the road.  And today marks a very special day - it's her scheduled c-section delivery day.  I think it's another small miracle from God because it's her new beginning, her second birth.  Happy Birthday, Char Char.  Mommy and Daddy love you.

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BECOMING BRAVE

The tide is turning.  And we're not sure which direction it's headed.  Life seemed to be more sure of itself last week when Dr. Weiss seemed confident that I could make the February 14th (39 week) goal date.  Although after today's visit, there is a 50/50 chance that our sweet one will be delivered on Friday.

Her amnio level has decreased again, and the umbilical cord blood flow is officially in the cause for concern area.  This is the level it was when I was admitted to the hospital many moons ago, PS.  The good news is that heart tracing on the non-stress test was great and her activity level has been normal, so it balances out the 'bad,' I suppose.  Perhaps enough to send me home until Friday's routine sono, but we will have to wait and see if it's good enough to continue further.  If she continues to trend downward then she will be delivered Friday morning, no questions asked.  Dr. Weiss, who echos the group consensus, says if she does need to be delivered, he is not concerned that I would be 38 weeks along.  Remember if the risk is too great for her to stay put, then she needs to be delivered for a more optimum environment for survival...so the "fear" of an earlier delivery is truly non-existent for me.  Isn't it nice when you remember that God is control and you aren't?  We don't have to make these tough decisions.  We just have to be brave as we trust in our Heavenly Father's perfect plan.

Pray specifically that God grants Dr. Weiss with the wisdom and confidence necessary in making the decision of delivery.  And if I'm headed for surgery, we pray that our team of doctors have steady hands and strong minds as they handle our baby.  We pray for her lungs to be strong and developed, for her heart to be in tip top shape and for delivery to be smooth.  We pray that her will to survive be great and her pain and suffering be minimal.  Please pray for God's grace to continue to fill us with peace and the strength needed to walk this incredibly difficult walk, one which I never dreamed to be living.  Please pray that as a mother, I am able to minister to my daughter in ways that she will feel my presence when I'm not even allowed to hold her.  And selfishly I pray that my epidural is as painless as it was the first time around when I had Patrick, as well as for my surgery and recovery both to be without complication yet swift so that my focus may remain on my precious baby.  As always, thank you for your constant prayers and support.  

The Lord will perfect that which concerns me; Your mercy and loving-kindness, O Lord, endure forever - forsake not the works of Your own hands.  

Psalm 138:8

HOPEFUL HEART

Here is a great prayer, especially for those of us who are feeling anxious lately...

Holy Father, we ask that you put your healing hands over us as we go through the scary road of the unknown.  We ask that you bring wisdom to the doctors in charge of both my and the baby's care.  Above all, most merciful and loving Jesus, protect our baby from all harm, bestowing upon her the health and vigor every baby needs.  We pray that you release our anxiety and worry throughout this ordeal.  May your healing love bring endurance to us to face this challenge with grace and optimism.  In Your Holy Name, we pray.  Amen.

SILVER LINING

Looks like I'm staying put for another few days...

Baby's sonogram showed that her amnio fluid dropped to 6.75 - from 10.55 - but it is still 'good enough' to be at home and not threatening.  The umbilical cord blood flow has fluctuated too but is still within the acceptable range.  And her non stress test showed us that she is still a happy girl.  We expect there to be fluctuation with the amnio level so it's not necessarily as discouraging as it may sound.  It's not great news, but it's certainly not the worst either.  Remind yourself that this is a different ball game we're playing, so for a healthy baby, it may mean something more drastic, but right now to my baby, it means holding out for a little while longer.  

My sincere hope is that it increases by our next visit, as has her growth.  Dr. Weiss will take her measurements next week so a specific prayer is that she has grown.  It's a bad sign if she is not growing or hasn't grown much.  That would be reason for 'something' to happen, a change to be made in our current plan.  Though the silver lining in today's numbers is that I'm home and we know if I'm home, it means that she is doing well enough to warrant it.  PRAISE HIM.

As I once said, it is by God's grace that we wait with peaceful hearts.  So even if this decrease turns into a trend, we know that it is God's plan and He will lead us through.  As I like to think, it's just HIS way of showing everyone the miracles which only HE can work.  And once she is healed, we will be in awe of her powerful recovery because it is truly by the Hand of God.

For nothing is impossible with GOD.

Luke 1:37

NUMBERED

In terms of chronicling this journey, it has been 161 days since we found out that there was something wrong with our sweet baby girl, 15 days of bed rest, with 9 of those days being in the hospital...but who's counting?!  It doesn't seem fair to continue numbering my posts when we've made it through much, much more than just what would have been 10 days in the hospital today.

I know I mentioned that Dr. Oliver said it is not without prayer that our baby is doing so well.  I couldn't agree more.  Remember that when I was admitted to the hospital, I was told it was for the duration of my pregnancy, without a possibility of being released.  And I'm not sure if it was even expected for Baby Girl to be doing as well as she is today.  But because of the power of prayer, my baby is doing well and I have been released from the hospital.  It is through our faithful petitions to God that our prayers have been answered.  Let's all remember what He is capable of and give thanks as we continue to pray for the healing of my sweet baby.

Though you have not seen Him, you love Him; and though you do not see Him now, you believe in Him and are filled with an inexpressible and glorious joy..."

1 Peter 1:8

DAY 9: GOD ANSWERS

Words can't describe how I feel right now!  I am currently sitting in my den with my dogs on either side of me as I type this post.  I've caught myself breathing in the familiar smells that are my house.  I can't help but smile.  

Still on strict bed rest, I am h-o-m-e home.  After this morning's sonogram, my doctors determined that the baby was jiving with bed rest enough to allow me to be at home.  Her amnio fluid level is now at an 8.2 but don't let the slight decrease scare you.  In medical terms, it's GOOD and CONSISTENT.  Also GOOD is the blood flow to baby via the umbilical cord.  Because of these two reasons, I am able to be here.  My assignment is still the same though: bed rest with bathroom privileges.  FINE BY ME.  

I still can't believe that I heard "How would you like to go home today?" come out of my doctor's mouth this morning.  At the very earliest, I thought it would perhaps be entertained after Friday's sono, although I wasn't holding out too much hope!  I have to tell you that as Dr. Oliver said, the power of prayer has a lot to do with the 'state of the union' of our sweet baby.  I couldn't agree more.  Because of all of you and for our countless conversations with God, my precious angel is holding steady...and enough for me to be home which is an added bonus.  

Driving home, I cried a little because to be truthful, I am a bit nervous.  Nervous because I hope that after having wished for this for 9 days, that I didn't just wish for a change, an environment that isn't good for my baby.  Obviously, that's just a mother's guilt type of thought process as we know my docs would not have sent me home otherwise, but I can't help but pray it's not the case.  

Dr. Oliver said that we really don't have a true "goal date" to get to, rather it's day by day until our sweet one declares that she is ready to be born.  Let's pray and have hope that she stays put for a few more weeks!  (I am 34 weeks.)  I will have twice weekly sonograms and regularly scheduled echo cardiograms.  I can't get too comfortable at home though, because if for some reason, Friday's (or any) sono shows that she is not doing at least as well as she is now, I will be readmitted to the hospital.  FINE BY ME.  I'd rather be readmitted on bed rest than have to deliver her early.

I wish that my heart could talk because it would say all the right words that I don't have now.  My baby is so blessed to have such an amazing group of people who love her so much.  Because of your prayers, your hope for us, your tears, she is carried.  We know that He is in the details and He makes everything beautiful in its time.  Thank you for never ceasing. 

But I have trusted in Your faithful love, my heart will rejoice in Your deliverance.

Psalm 13:5