There's No Place Like Home... There's No Place Like Home....

Dearest wee Bug,

WE ARE HOME!!!!

 There aren't adequate words to describe the feeling I had when we turned onto our road yesterday....Kind of like a huge weight lifted off of my shoulders. We made it through. Wow! What an amazing feeling! I can barely choke out the words "It's over now" through the huge lump of relieved tears that now resides in my throat. We walked the road of the truly terrifying and emerged with a few more scars, a few less tears, a lot more faith, and feeling more blessed than we ever have before. Intact. Whole. Better than ever.

I have to say, I knew that you were tough. I knew that before you were even born. But baby, you have blown my mind with how much strength you possess in that teeny body over the last two weeks. And my goodness, are you ever smart! Several times we have tried to trick you into taking your medicine and you have proven every time that you are on to us! You watch everything with those big blue eyes; just drinking it all in.

I find that today everything around me is in technicolor. The sky is just a tad bit bluer and the trees a little bit greener. Even the dry, dead brown grass is just a smidgen browner (haha). Even though I was outside around 40 minutes total every day (some days slightly longer...), I don't think that I even truly took in my surroundings. I was always on my way to make a phone call, or send some texts, or hurry back before you woke up again. It's amazing how much clearer the entire picture is without the glare of the ever present hospital lights, the constant noise, and the never ceasing worry.

 The sheer joy on your face when I settled you into your bed last night was like a balm to my heart. I think that was the moment that you realised it was over too. You spent most of today gracing everyone around with your glowing smiles and tiny giggles. Showing off every single thing you know how to do. Clicking your tongue, which you had been working on for several weeks before we left. Blowing raspberries. Growling. Laughing. :) Oh, how I have missed you, my sweet angel! I think I would have given every single thing I have just to see that grin again!

Normal life will begin again in the coming days and weeks. You restart therapy next week, Ayden starts school the next week, and Caleb and I start the following week. It's going to be a big adjustment for me to return to studying and classes after spending the last 8 months at home. BUT! You will get to spend a lot more time with Daddy and I may get to nursing school yet! 

For now, I am just going to bask in the glory of your beautiful smile and celebrate how extremely blessed we are. 

 Poor Mr. Cuddles! He is in BIG trouble!

Thankfully, everything is quickly forgiven!

I love you so very much, my Itsy Bug. Every single day that passes, I fall in love with you a little more and find more in you to admire. I am so grateful, thankful, proud, and blessed to be your mama. :)

XOXOXO,

Mommy

The Path Was Long and Full of Pitfalls

Dear sweet Liddy,

Today the doctors gave you the o.k. to head home tomorrow. Hallelujah! 

The last two weeks have been the roller coaster of a lifetime (and enough to last me one too!) full of joy, sadness, fear, whispered prayers, and yes, even laughter. I will be so overjoyed to put this all behind us as we walk out of Riley Hospital's doors tomorrow and start a brand new life. One without the threat of open heart surgery looming on the horizon. One with a broken heart now miraculously whole. 

There are memories from this hospital stay that I will never forget. Thankfully, you will forget it all in time. Daddy and I will be left to carry everything for you. I know that I am changed by this experience, just as I was by your birth. I can never return to the Mommy I was before we passed through these doors.

I have prayed more the last two weeks than I have ever prayed before. And not just for you. My prayer list has grown with every passing day. The words "You will be in my prayers" pass my lips more and more. The stories that I hear weigh heavy on my tender heart and I know that long after we are merely a faint memory in the minds of these other parents, they will still be in my thoughts.

I have always been so proud of you, and so proud to be your mommy. But the last two weeks, something else has emerged. I am proud of myself. I have faced down what seems to be a thousand demons, silenced some of my greatest fears, and grown more faithful. I have stood strong when I felt like falling apart. I have fought (and drove doctors and nurses alike crazy!) for you. I have heard the voice of God and have handed the thing most precious to me in all of the world into His loving care. Even when it was hard, even when I wanted nothing more than to hold you tight to me.....

He has proven that when I am faithful, He is as well. :) He has never once failed to return you to me, stronger than ever. 

Yes, the path was long and winding, full of pitfalls. But we, you and I and Daddy, are now standing on the brink of a whole new path. And I can't wait to see what it brings. :)

I love you.

XOXOXO, 

Mommy

Praise God!!!!

Dear Lydia,

After two surgeries, a collapsed lung and being in the ICU for a total of 12 days, we are finally moving on. Another floor, new faces, closer to getting home. Home. Such a very sweet word after all we have been through. 

Every single day we have been here I find more people to pray for....from the mom down the hall with the 16 year old son who is dealing with some very heavy stuff, to the baby across the hall who is the same age as you and has only spent 20 days of his entire life at home, to the tiny girl next door who is here waiting on a heart transplant. All of these stories weigh heavily on my heart. 

It's amazing to me that every time God hears the whispers of self pity in my heart, He places someone directly in my path who reminds me that this all could be so much worse. 

I could be watching you lay in a bed, not knowing if you would ever open your eyes and look at me, let alone smile, laugh and talk. I could be coming day in and day out, hoping for my baby to get better so that I could take her home where she belongs, finally. I could be watching you fade before my very eyes, knowing that your very life depends on someone else's misfortune, and praying that a heart comes in time. What gives me the right to feel sorry for myself? I am truly blessed, and lucky. But for a twist of fate, those other parents could be us.

The neighbor baby's mama prayed with me the other day while they were starting an IV on you. I was standing in the hallway, with tears streaming down my face, because I couldn't stand to see you hurt any more. She told me that every pinprick, every hurt, every tear served a greater purpose than we could even imagine. Each of these will be worth something in the end. Yes. They will make you stronger, Lydia, and they are all intended to heal your formerly broken heart, now whole and healthy. 

Praise God for His patience with me when I forget things that I knew without a doubt yesterday. Praise Him for His constant reminders that WE are the lucky ones. We are the ones others should envy. Praise Him for healing you.

I have an obligation to share our story and the lessons I have learned (and am still learning!). For you. For others. For myself. For the glory of God.

I love you so much, Bug, and I am so proud of you! You never cease to amaze me in some way every single day.......

xoxoxoxo,

Mommy

Trial By Fire (Messages from God)

Dearest Bug,

I am sitting here beside your little crib in the ICU. Our time here in this particular room is dwindling to an end. Unfortunately the end means another surgery to put in a pacemaker. It makes me sad. But I'm ready to have you at home again. Pretty sure that you're tired of all the disturbances here as well.

Keeping vigil gives a person a lot of time to think, and I find that I am no exception. I've spent quite a bit of my time over the last 10 days talking to God and revisiting the trials and tribulations of the last year. It seems that God has had a lot to teach me. 

I hope I have been listening closely enough.

So in honor of all of these deep thoughts (surprised my brain is not smoking!), I have compiled a list of what I have learned from my stroll through the flames.

*Sometimes the worst heartaches in life turn out to be God's greatest blessings. 

*The very best prayers are those that have no words at all. Simply our hearts screaming in pain to our God, who knows their every nuance. He hears the words that are unspoken.

*Tears don't indicate weakness. It's ok to cry. Those tears are love, so intense that it has no choice but to just spill out a little.

*It's possible to be weak enough to fall to your knees and strong enough to withstand the toughest pressure all at the same time.

*When the going gets tough, the tough keep going. When you love someone or something so much, there simply are not any other options.

*When you fall to your knees and can not stand, you're in the perfect position to pray.

*There are easily a thousand different kinds of tears. Happy ones. Sad ones. Scared ones. And those that come from overwhelming awe.

*What seems to be an ending isn't. It's a new beginning.

*True beauty isn't always in the big picture. It's often in the tiny details.

*As bad as you think things are, some one always has it worse.

*Just when you think that your heart will burst from all the love inside it, it doesn't. It just expands.

*By working hard to uplift others in their time of need, you end up uplifting yourself as well.

*Miracles truly DO exist. 

*We are not to be pitied because of circumstance, we should be envied.

*We ARE chosen. I was meant to be your mama, and you are exactly as you were made to be. Perfect.

I'm sure that there were many, many more lessons that I have learned throughout the last few months of your existence. These are simply the ones that have been bobbing around in my head for the last few days and the ones that I felt that at this moment, right now, needed to be shared. 

We will learn a whole lot from each other through the coming years. I'm positive that you will continue to teach me as much, if not more, than I could ever hope to teach you. 

I love you with all of my heart. Forever and always. 

XOXOXO,

Mommy

A Picture's Worth a Thousand Words....

Dear Friends,

There isn't much to report today. Lydia's unique personality is slowly returning day by day. (I almost got a smile earlier!) She's much closer to getting back into our "regular" home schedule. She is able to have the oxygen off while she's awake but still isn't sat-ing where she should while she's sleeping, so we have to very gently replace it when she drifts off. Thank Heavens it's on less. Little Miss I Have 15 Hands has been yanking it off every chance she gets anyway. :)

Pacemaker placement is scheduled for Monday. I'm still praying for God to heal the heart block if that is His will. Most of the doctors here don't seem to believe that it's truly possible for Him to heal it, so I hope the Master Healer decides that they need to see a miracle!

Just wanted to share some pics with you all. Minus all the cuts, scrapes, irritation and bruises on her precious face...SHE LOOKS AMAZING!!! 

PRAISE GOD!!!!

I'm working on a special post but it may take me a little while to complete it. Have patience with me.....I just can't seem to tear myself away from my baby when her eyes are open. I'm sure you understand. :)

Have a wonderful weekend, everyone!

Love,

Heidi

Tiny Miracles

She's returning!!! :) It was so good to see her playing today!

Incredible Pressure Leads To Incredible beauty

Dearest Lydia,

While reading a book this afternoon, I ran across a line that spoke to my heart. It reminded me of something that I always told my patients when I worked in oncology, and it is always, always an inspiration to me when tough times come to call. 

You aren't old enough to have started the love affair with diamonds that all ladies seem to have. But someday you will. I find that the most amazing thing is not necessarily the diamond itself, but how it is made.

A single piece of ordinary coal. Black. Dirty. Nothing special. 

Over thousands of years, even millions, that plain piece of coal is put under tremendous pressure and exposed to 700 degree heat. Its a delicate balance. If the conditions are not just right, the coal becomes graphite. Another ordinary element. But with exactly the right environment, that little lump of coal becomes something truly special. A glittering, beautiful treasure. 

I think life is a lot like that. Some people seem to have it easy. Their lives move along with very little pressure, very little heat. There isn't anything truly special about them; they are ordinary, plain, even a little boring. 

Others face tremendous hardships, heartaches, and pain. They are the ones that others walk away from, shaking their heads, and thinking, "I'm glad that's not us." They are the ones who are the subjects of our prayers, our compassion, our pity. The amazing thing is that they don't ask for any of those things, or even expect them or want them. 

Truth is, they should be envied. They are the chosen ones. God has hand picked them to become His most valuable treasures, His diamonds. 

We, you and I, are His diamonds in the rough, Lydia. And I feel that we are so immensely blessed because of it. Do we have extra hurts, cry extra tears, and face extra obstacles? Yes. But each of these refines us and makes us more beautiful in His eyes. 

XOXOXOXO, 

Mommy

SuperBaby Rides Again!

I am so excited right now that I am almost in tears.

Yesterday was another worrisome day, with oxygen saturations on a roller coaster, which led John and I to be on one as well. The doctor decided late yesterday afternoon to do another chest x-ray (more for our sanity than anything). It came back good and he approached us about the possibility that Lydia was suffering from some pulmonary hypertension. He started her on a new medicine that would help balance it out, and told us that we should see results in 24 hours.
They also cut quite a bit of her pain medicines out and eliminated her sedation altogether.
This morning, she was awake, although still not very happy. After taking a short nap, she woke up with a much better attitude. We sat her up in the  bouncy seat and put on Sesame Street, which she watched intently for almost 2 hours!

Rounds brought us excellent news! It seems that the lessons I had to relearn Sunday have given us fruit already. :) They will be removing all tubes and lines today except for oxygen and her pacemaker, which will make it easier for us to hold her, feed her, etc. She is returned to on demand feedings, including baby food. Sooo she has had a bottle and a little bit of carrots this morning. Carrots because they are her favorites! :) Her heart rhythm seems to be attempting to return which means that the possibility of a permanent pacemaker having to be placed next Monday is a little bit more remote. Not impossible. But her heart just gave us a little more hope that it won't have to be placed at all.
What a miraculous turn around we have been given today! An absolutely awesome gift!

On Saturday when things were at their worst, I tried a thousand times to hand my fears to God. Every single time that I bowed my head, I had no words. My heart simply skipped and shuddered and my voice stuck on the huge lump in my throat. All that my heart and mind seemed able to say was, "Oh God." over and over again. My mom says that sometimes those are the very best prayers.
I still have to work hard every day to silence those mommy fears and hand my baby to Him. But days like this show me why it's necessary. :)

Thank you, God, for hearing the prayers of my heart even when I can not find the words to speak. Thank you for holding my precious girl in Your hands, even when I fight You to try to hold her in mine instead. Thank you for healing her by guiding imperfect people to perfect moments of shining brilliance. Thank you for Your grace, which forgives me my doubts and fears. But most of all, thank you for giving me this beautiful creation.....

Little Miss Princess

Dear Liddy,

You are sleeping. Peacefully. Sprawled out as much as your poor battered little body can be. Arms flung over your head. Legs all a jumble amid blankets hastily kicked off your precious tiny feet.

You are wrapped up with a blanket around your middle, not because you are cold, but because you are beginning to be your old wily self, yanking any type of wire or tube that falls into your ninja hands. 

Your opinions of your horrible treatment at the hands of all of these strangers who wake you up to mess with you, give you yucky medicine, poke and prod you, and starve you for days is getting louder and louder. No longer the weak little cries of a few short days ago. Now your little lungs are full of air and you are MAD AS HELL. Oooh. Somebody is definitely going to pay for their mistreatment of the Princess. I just hope that somebody isn't me. 

I truly wonder what is going through your mind. I'm betting it's pretty confusing. You had Mommy and Daddy pretty well trained. And somehow you went to sleep on Thursday and woke up in a different era. We don't pick you up when you cry. We don't feed you before you really get hungry. Darn! All that hard work straight down the drain. Now you'll have to start all over again. *sigh*

I got the chance to hold you yesterday, after three (well, almost 4) loooonnnggg days. You knew. You knew without a doubt it was coming and morphed from a little wildcat into a picture of peace and serenity. When they laid you in my arms, your eyes widened and met mine. You snuggled right in, forgiving me every single transgression, and forgetting that you were hungry, just for the sheer pleasure of cuddles. You laid there, nestled against me, for almost an hour, and returned to your little bed a changed baby. Gone was the wild woman, replaced by what appeared to be an angel to me. :) 

Daddy even got in on the action later in the evening....

But you made him work harder for it than you did me.

Your skin now carries a new found blush of pink. I never realized that the reason you were so pale was because of your heart. I guess I always thought that it was an inheritance from your namesake Nana, and another indication of your future status as a red-head. Now you have the flush of healthy, well oxygenated tissue and you are more beautiful than ever.

I can't wait to post a picture of you with that bright, familiar smile. It's getting closer to coming back every day. I just pray that we, including you, Little Miss In A Big Hurry, have the patience to make it there, without losing what little grasp on sanity that we have left. HA!

Loving you so much,

Mommy

Lessons in Faith

Dearest Lydia,

Sunday is a day of rest. And that's exactly what you are doing today, albeit with a little bit of medical help. Yesterday was quite easily the hardest day of your life (and mine too!). Even though you made several great steps forward, we also took a few steps back. 

You were going like such a tiny dynamo, so determined to shed all the tubes and wires encumbering you, to move on from this surgery as quickly as possible. Then disaster struck. You labored to draw each breath. I watched with fear in my heart as we came so close to losing you several times throughout the day. By the time we got an answer for what was causing the problem, even though I was again terrified, it was a relief. An answer. Something that could be done to fix you. 

Faith is a funny thing. I have held so tight to the faith that God will hold you, protect you, make you healthy, happy, and whole again. Even through your surgery, I somehow was able to hold that faith. But when faced with an entire day of seeing you in pain, watching you struggle, or with the possibility of losing you, that faith wavers. Its such a hard thing to let God take care of you when looking into that tiny face that I love so much and watching you fight for your life. How can I let you go if letting you go might mean truly losing you? 

I long to feel your weight in my arms, to have that little body snuggle in close. I miss your beautiful smile, your precious babbling, and that melodious giggle. I want my baby. My angel. My heart.

I had a talk with Grandpa this morning. When I voiced my desire to have my baby back, he said some things that refuse to leave my head. And although I hate to admit it, I think that he may be right.

You, my precious gift, will never be fully returned to me until I let you go. When I finally get it through my thick skull that I can NOT fix this; not with my fears, not with my worry, not with my love; I will free both of us from the crushing weight of my own helplessness. When I give Him my permission to do with you as He sees fit, He will heal you in ways that no doctor, no nurse, and yes, no mommy has the power to. He's using the only way He has to prove to me again, just as He has a thousand times since you were conceived, that He is in charge, not me. 

There will be setbacks at times. You just underwent what is a MAJOR surgery for an adult, and you are such a tiny baby. It simply is unreasonable to expect you to miraculously wake up the day after, smiling and babbling away. You HAVE made strides. You HAVE proven what a very tough and determined girl you are. You HAVE already come so far. These speed bumps aren't necessarily steps backwards, as I keep thinking, but instead brief moments where you hang up your SuperBaby cape and return to being just my Itsy Bug.  I want you to be a fighter. But I have to be able to accept that, right now, you just aren't strong enough to fight all the time.

What is faith without tests? Pointless. That's what. It wouldn't be faith if there weren't moments that every belief we cling to was pushed to the breaking point. It would just be empty words. Empty promises.

I am a work in progress, Liddy. And sometimes, I just need a reminder. 

So today, as you rest peacefully, giving me a chance to relax as well without the stress of running around putting out proverbial fires, I'm going to pray. A LOT. That God will give me the strength that I need to give you to Him. That He will bolster my faith, making it strong enough to resist the endless battering of waves of fear and doubt. That He will give us all peace. That we will feel His love, as well as His healing hands upon us. 

I love you more than life itself. 

XOXOXO,

Mommy

Surgery Update 5

 Yesterday am before vent removal

Yesterday brought a lot of challenges for us as Liddy's parents. While we were very glad to have her off of the paralytics and the ventilator, the discontinuation of those brought a battle to control her pain (and her!). She was receiving morphine every hour and still experiencing pain. That's rough to deal with as a mommy. Nothing we could do but touch her, talk to her, and tell her how much we loved her. We finally got her pain under control around 5 pm last evening, and although she was still awake, she was glassy eyed (from 4 different meds for pain) and not very aware of where she was or even who we were.

 This morning before the tube removals...

 She rested well last night. Thankfully. Today has been a ground breaking day.....I woke up to her looking around, wide eyed and bushy tailed. I spent a little time kissing her sweet face and talking to her before all the excitement started. Within a few hours we lost an IV, a catheter, an arterial line and one of the lines that went directly to her heart. She's gotten to eat (twice) although she has been having a slight problem with de-sats while she's eating or if she gets upset. That means that we have had to d/c the plan to wean her off the oxygen today. I think that we've made plenty of headway for today anyway. 

The doctors think that she may be ready to move out of the ICU sometime tomorrow. That in itself is the most wonderful news!!! 

Hoping that we will be posting pics later of us holding her. Its been too long since I have been able to cuddle my baby..and I know John feels the same. Counting the days until she flashes that gorgeous smile back at us again!

Thanks for everything.......

Love,

Heidi