One of the best days

14333016_298730933833087_5619537209019762505_nThursday, September 22nd, 4:22am – The bright lights on my bedside clock confirm that I am up way too early for a day that I don’t have to work.  As I often do upon awakening, I let the fog dissipate for a moment and realize why I am off today.  Today is the big DAY, the day we have prayed and believed for, for over five months now.  Barring any complications, you are busting out of Nicklaus Children’s Hospital for your long anticipated homecoming!  Of course after I remember all of this, there is no way I will be going back to sleep, work or not.  I might as well enjoy my favorite time of the day.

Teeth brushed, I meander to the kitchen and get a cup brewing and moments later, warm cup in hand, I settle into my chair, careful to find glasses first and crank up heating pad.  My tummy is full of butterflies as I being to pray and thank God for this day and your continued progress.

Nervous energy continues as I text a few close friends and family members.  I am having trouble deciding what to do next.  Do I go to town and buy balloons and food first?  Do I go down to your house and do some cleaning and finish organizing your room and hang the “Welcome Home” banner?

Mommy spent the night with you last night and when she facetimes me, Nana realized you are not a morning person yet.  We will see what we can do about that.  I wonder how you felt last night with Mommy in the same room, right beside you all night for the first time since you were delivered on April 13th.  I know Mommy was thrilled and so excited it was hard to sleep.

Nana is so emotional today and I heard that your Grammy is too.  I think of your sweet face all situated in your car seat, or imagine the goodbyes of the doctors and nurses that have taken such good care of you, or what you will think of sunlight and grass and flowers and how mom and dad will feel driving away with you settled securely in the car with them, and I cry.

I remember the beginning of your journey and your tiny body being wheeled away and loaded into a helicopter and friends and family holding hands in a circle and praying and I cry again.

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I think about the surgeries and the complications and the good days and bad days and the crazy roller coaster ride of the past few months.  Emotional doesn’t even seem to describe it, I feel overwhelmed with joy and thanks.  I feel like dancing and singing and doing cartwheels, all while praising God.  So I do all of these things, except the cartwheels.  I do want to be here well and uninjured when you arrive.

Throughout the day, Mommy calls and Nana helps her call pediatricians; we have to find one that can get you in on Monday in order for you to be released.  What a feat, but it’s done.  We will do anything to get you home!

After going to town and getting a Welcome Home cake that you can’t even eat yet, Nana arrives at your house to finish what Mommy had started in your room.  Did you know that you have been so blessed by friends and family that you have too many clothes and shoes and bows?  Nana spends a lot of time just looking at all of your cute stuff.

Oh Cali, you are so loved!  People follow the reports on your progress and pray for you daily.  They have been more than generous with donations to help mom and dad spend more time with you and pay for gas and hotels and food.  They have offered words of hope and advice and encouragement to all of us who call you our own.  We have been abundantly blessed and we are all so overwhelmed and grateful.

As the last ray of the afternoon sun casts a warm glow through your bedroom window, I got the text I had been dying for all day long; you were on your way!  Mommy posted a picture on Facebook of you nestled in your car seat with a big smile so she could share the news with all of the people who love you.  You looked like you knew exactly what was going on.14370075_300102760362571_281185968660978266_n.jpg

After that, the hardest part of the day began; the waiting.  Nana paced and checked my phone over and over again for the latest report of where you were on your journey.  Mommy and Daddy hit the 5 o’clock Miami traffic and then had to stop and feed you along the way.  Oh, would you ever arrive?

When Papa and I got the message that you were close, we went outside to wait on the porch.  My stomach did flip flops when I saw the headlights come around the corner.  You were finally home!  Papa was concerned you might get a bug bite so he reminded your daddy to rush you up the stairs.    The time had finally arrived and not one moment too soon.

We were all exhausted at the end of the day, but it was a good kind of tired and our hearts were filled with joy.  We are anxious to watch you grow and learn and thrive.  Cali girl, you are our little miracle and such a strong little girl.  We love you ❤

Related stories:

Cali; the gift that keeps on giving

Just give me my binky

When life throws a curve ball

Just give me my binky


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We sat there in the dark watching her fight sleep, contorting her little face every which way trying to hold on to her binky when it threatens to fall.  A binky is otherwise known as a pacifier for those of you who may not have heard it referred to that way.  She loves that thing.  I’ve heard folks voice their opinions on them both pro and con and have probably stated my own in the past and likely in a negative way to some poor new parent.  This is something else I have learned; don’t judge the child still sucking a binky or maybe still wearing diapers.  I don’t know their journey.

13912343_280314879008026_5289825603233603215_nCali will be 5 months old on the 13th of this month and all she knows up until now is the inside of a room without outside windows.  It is mostly white and very sterile.  Thankfully, we can dress up the crib a bit and bring some toys in, but it’s just not home.  We can’t roll around in the floor or fall asleep with her nestled on our chest.  We have to wear yellow gowns to hold her and she is still attached to several lines or tubes.

I try to imagine her discharge day and the way her little eyes will behold so much newness in one day.  She will leave the room she has grown up in thus far, see sunlight, ride in a car, see her own home and sleep in a new bed.  As anxious as I am for all of this to occur, my heart goes out to these little ones making these big adjustments.   They are used to the whiteness, the machines, the beeping and blinking and the cries of other little ones.  Maybe I’m just emotional because this is my little granddaughter, but it’s something I have never once thought about until now.

I am determined to learn from this experience, resolved to be a better person because of it, and adamant about increasing in compassion and empathy for others.  This brings to mind the verse in Hebrews, “For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are–yet he did not sin.”

We should be able to empathize with the weaknesses of others and consider their voyage through this life and the ups and downs and tests and turmoil.  Maybe I’m being too transparent when I admit how blind to the predicaments of others I have been in the past.  Perhaps some of you will think less of me because of it.  But, when I decided to have a blog, I always intended to openly share experiences, always hoping my stories would help shed light on someone else’s path.

I am sincerely grateful to God for every opportunity I get to show love and compassion to someone else, even though I still often fail Him.  I still fail in recognizing needs or simply stay too busy to do all that I would like to.  You know, part of loving others starts with really listening, taking time enough to know a need exists.  We are a busy people and we have to make a point to slow down and be attentive, even in our own families.

PS – Cali is doing much better.  They removed her PICC line this week.  Her bottle feeding has increased greatly as tube feeding has decreased.  She is up to 8 lbs 1 oz and if she continues to do well on feeds and continues to gain weight, our discharge date will be closer 🙂

Related articles:  When life throws a curve ball and Cali; the gift that keeps on giving

 

Cali; the gift that keeps on giving

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The prompt was “Crisis” and since NICU parents deal with this all the time, I thought this was appropriate.

My daughter and I had a great day with our little Cali yesterday.  I blogged before about Cali’s premature arrival and the complications she has faced since.   She is 3 ½ months old and we still don’t have a homecoming date.

We stayed in Miami last night so we were with her until around 9pm and my daughter even got to help give her baby a bath for the second time ever.  It’s tricky with a PIC line.  Also, when you live over 80 miles away and spend most of your days here, and the baths are given at night, it’s tougher to participate.  Last night was the first time I had ever seen my beautiful little granddaughter’s skinny little behind.  What a sight to behold!

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All Clean!!

We got up this morning and had breakfast, anxious to arrive at the hospital.  In good spirits, I parked the car and I chose the stairs as my daughter took the elevator.  We usually park on the 5th floor but I always beat her by taking the stairs.  And believe me; I need the exercise with the delectable guava pastries (stress eating) that Nicklaus Children’s Hospital serves.  Leave it to me to know about the food.

There was a long line at the check in and since I had left my monthly pass in the car (and I wasn’t going back outside and up those stairs or in the sweltering parking lot elevator) I had to wait in it.  Impatiently, Morgan flashed her pass and went on up to the 2nd floor, eager to see Cali.

When I arrived in the NICU (Neonatal Intensive Care Unit) a few minutes later, I could tell by Morgan’s face that something was wrong.  The nurse explained that Cali had begun vomiting last night and her heart rate had dropped a little a few times.  This can mean so many things, but they were immediately stopping all food and doing blood work to rule out infection.  They asked us to leave so they could insert a second tube in her nose (opposite nostril from feeding tube) to pull excess air from her stomach.

My eyes welled up and in all seriousness, I wanted to curl up on the floor and cry.  However motherhood kicked in and I knew I had to be strong for my baby girl.  We went to the waiting room until the procedures were over and then my baby girl wanted to hold her baby girl.  I sat in a chair beside her, more for moral support than anything.  Cali slept and I looked around the room, which currently is home to approximately 7 babies; I overheard them say they have a total of 42 patients in NICU right now, which I understand is a lot for them.

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Morgan and Cali

There are babies in much more serious condition than Cali’s.  There are older ones, younger ones, bigger and smaller.  Some cry a lot and some you never hear a peep out of (at least when I’m there).  I pray for all of them and I ache for the parents and what they are going through.

They come here from all over, show their ID or passes, push buttons so doors will open and wash their hands thoroughly multiple times per day.  They sit in a room that is filled with beeping machines that have the power to give them quite a scare and they listen and try to understand as doctors and nurses reveal plans and strategies.  Some of their children are growing out of the clothes and diapers they got at baby showers and some have even outgrown some of the toys.

Yet, they face each crisis with a strength that I had never seen before, having had two healthy, and delivered at-term babies.  I look at them and not only compassion floods my soul, but also respect and admiration.  I will shed tears in my prayers over this little world I didn’t realize existed until April 13th.  Sure, I knew there were sick babies, but I had no idea of the big picture.

I have focused on one small group of breaking hearts in my post, yet there are hundreds of others.  More people going through this life with a heavy load and dealing with things we can’t imagine unless we have been there.

I know I’ve said this over and over, but let’s give people the benefit of the doubt because we truly don’t know.  That lady in line in front of you with the blank look on her face who doesn’t hear the cashier saying, “Next, please”, could have been my daughter this morning.  Be patient with her.

We are praying and believe that Cali will bounce back from this step backwards and come home quickly and give her doctor’s a shock.  This journey is increasing our faith and our strength and I thank God for that. God will continue to provide the strength, mercy and grace for each and every day.  He always does!

I would also be remiss if I didn’t thank the amazing team of doctors, nurses and all other staff at Nicklaus.  We couldn’t be in better, more caring hands and I’m truly grateful.  Oh, and a special kudos also to the cafeteria staff for their tasty creations and their smiles of concern.    We also have the best friends and family ever and our community has rallied around us like a great wall of love and protection.  There is NO way to begin to thank them all appropriately!

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