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!

Forward progress

13511042_10154214939926763_6505748762857644676_nWas the game called Sorry where you move game piece forward or back based on where you land?  The other day my daughter said, “Two steps forward and ten steps back” and I visualized that game.  She was referring to her baby’s progress this week after three months in the NICU.  She was frustrated, exhausted both physically and mentally and was exaggerating just a tad.  It would have been easy for me to say something trite like, “Well, it could be worse”, or “All in good time”, but I knew it was better to just stay silent and try to rub the knot out of her neck.  I know my daughter and her patience level was waxing thin on that particular day.

I have learned that sometimes it is just better to say nothing.  I should say that I am learning this, because I certainly haven’t mastered it.  I have an entire library of “go to” clichés that are completely useless or even irritating in situations that I fail miserably at recognizing on occasion.  Sometimes a smile or a hug or just your being there does more to ease the angst of the weary than a thousand words could ever do.  Often, just listening is all that is needed; we don’t always have to feel compelled to “fix” things.  This is hard for me, I will admit.  I want to give advice, answers, help resolve and implement ideas!  But, as I said, I am learning.

I don’t have the time or inclination to delve into the multitude of issues that I’ve been faced with in the last few months.  However, suffice it to say that I understand being too tired to talk or too mentally exhausted to answer a simple question without emotions turning into teardrops.  With that said, I know in whom I trust and I can approach my trials and tribulations without fear and with faith.  This doesn’t mean I won’t get bone tired sometimes and need to seek a quiet peaceful place to re-fresh myself for the next battle.  (Yes, there will be more this side of heaven.)

What always compels me though to think I have to have an answer or suggestion for every tough situation I see others going through?   I don’t know.  Most of the time, I truly believe it’s that I really do want to help and soothe someone’s heart and I’m just not always sure of how best to accomplish that.   I do know that I had NO idea what people were going through when they spent months at a hospital with their child until our precious Cali was born.

Sheepishly, I think back at how silly or even heartless some of my pre-Cali comments must have sounded to others.   The thing is, we really do not know what anyone is going through unless we have walked in those same shoes and even then, experiences still vary from person to person even in the same scenario.

It amazes me that even in the tough times; God teaches us if we let Him.  As we go through pain, if we follow His lead, we can grow in the midst of it.  We can come out on the other side with a better understanding of mercy, with more empathy.

The other day as we pulled into the hospital park lot, my daughter (who still needs to learn patience) was complaining about the SUV in front of us.  She was anxious to get up to the 2nd floor and love on her baby, and this car was too slow, and in the way.  She spouted off something negative and I found myself right smack dab in the middle of a teaching moment.  I gently reminded her that the person in the car could be arriving at the hospital for the first time with a sick child, or leaving alone, never to bring theirs home.   She got my point and I have noticed her growing in grace through all of this.

So, have patience with me and I will try to have more patience with you.  Forgive me when I say all the wrong things or end up doing nothing because I didn’t know what to do.  As for me, I pray to practice giving people the benefit of the doubt, to recognize that their day might be going worse than mine and to try not to offer up trite, commonplace sentiments when a hug or a prayer might serve them better.

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