It is a melatonin night!

Brimming with anxiety, excitement and overwhelmed. Not only will I know have four kids, but now I will have a preemie, on Oxygen.
I couldn't be more grateful for the many miracles that have taken place. JUST HOPE I CAN SLEEP! Took a melatonin for tonight. So tired don't know if typing is going to go well or my thoughts will make sense as it kicks in. But can't shut off my brain.

 So excited and nervous to bring her home. Rooming in at the hospital Friday night. NEED Sleep, this may be the last night of good sleep for months. Like I haven't been restless and worried or woken up in the middle of the night for the last almost 3 months anyway. And really with three kids already at home, we rarely go one week with out being woken up at the very least one night, or my hubby and I  wake each other up. Needless to say, I'd say we are usually always exhausted.

I have so much I want to do, but for now I think I will have to stick to the basics, I just don't think I will have the time or the energy to clean like I want to. She won't care will she?  She won't need to lay on my carpets or even bathe in my tub for a long time. I think I will squeeze it in later. Those things won't stop needing it anyway.

I had the ambition to sew a nursing cover, have the fabric and ran out of time. Get to that later too.
Like I posted earlier, I was thinking we had another week, and I really didn't have time even then, with the traveling and the other 3 kids it has been all I can do to rotate my laundry, cook dinner and clean the kitchen.

I think I will just have to say to the plans I had for cleaning my house a principle I have now learned.
IT IS WHAT IT IS, or in this case It looks like what it looks like, throw out my ideal homecoming and just think
BABY IS HERE, BABY IS HERE, BABY IS HERE.
And just say to myself " LET IT GO"

My hubby is going to be home with me all of next week, so between us we may actually get something done.
We'll see. "Who cares, as long as I can wipe the surfaces I need to, sanitize the house, stock up on diapers, hand sanitizers , soap and get the laundry pile a little smaller, I'll call it good.

I am afraid my melatonin is kicking in, my typing is getting progressively worse. Can't even type with out retyping every other word. Good night. Hopefully putting all these thoughts out there into cyber space somewhere will at least empty my head to get a somewhat restful sleep, after all melatonin doesn't usually work all night for me. I better get sleep while my body can no longer stay awake.

Sorry for grammatical errors, misspellings or any other problems in this blog.  I am sure you can guess why, thank you vitamin makers for helping rest my mind long enough to sleep even a little.
Wish me luck.

 

And the LIGHT APPEARS at last!

That light at the end of the tunnel has arrived at last, and it came suddenly!!!

I was really geared up and preparing for Cleo to come home in another week or so.
Surprise! I go in on Wednesday and they tell me she is going to be discharged by Monday or Tuesday.
Then  I go in Thursday morning and they tell me she will  be discharged on Sunday.....What?
I am in SHOCK!! It is an describable surreal feeling. My head began swimming almost immediately.

Had they just said what I think they said, did I understand them correctly? Or is this just some dream and I will wake up and be waking up another day just to hear the same old news, or no news.

The reality of this happening hit me on my Drive home from Salt lake as I was driving home alone, with my thoughts. I began crying and laughing with joy and a release of pain all came spilling out of me all at once, I was driving so I needed to be careful.

After all of of this- it seems to be coming to end, Yeah, talk about a roller coaster. This is the part where you climb to the top and your heart just starts pounding and you kinda hold your breath and then there is that huge drop where you just scream with delight and terror as you hurdle with intense speed down that huge slope. CRAZY!! That is my favorite part, the butterflies and stress just fly out. You put your arms up and just scream. That is about how I feel right now.

I woke up with a smile on my face and a new energy.
Now, I feel that extra push to get the things done that just seemed like a heavy burden because all I wanted was my baby. NOW, she is coming and I have a TON to do! What am I doing here blogging like I have all the time in the world! Yikes!

I will have to give more detail about her discharge when I have crossed a few things off my list.
But for now I will have to get busy.

I did want to post a picture they took of her dressed as  HULA GIRL. I can't believe how stinkin' cute they turned out.

 

Doesn't that just make you smile!!

Coming to terms, at least for now.

Cleo is starting her count down on her A's and B's, as of this morning she has had nothing above a Grade Zero for 3 days (we only need 4 more), we'll take it. Hopefully, we will not have to restart the count, but I will remain cautiously optimistic. I don't want to loose my footing just as I am gaining it.



 You know through this whole thing I can honestly say, I haven't had strong impressions or revelations like I would have wanted them. I pray all of the time, and I can say that I have sometimes been disappointed by the lack of STRONG answers. All of the answers have been subtle and few have been glaringly obvious.
Does that mean HE hasn't heard me?
NO, It just means I need to just trust that what I do not see, and remain worthy to feel.
The answers haven't been impressions as much as the way things have gone.
Cleo is doing remarkable, considering what could have gone wrong, or the time that it takes.
She has overcome so much.

So yesterday I felt some answers to my prayers and thoughts came clearly to my mind through the spirit.
"It is what it is, you can't control it", I have heard that phrase before but never personalized it to my current situation. Upon having that thought, I finally said, "yes, it is what it is" with peace in my soul. I haven't felt that way yet.

I have been kicking and screaming the whole way. Impatiently angry that I had no control. Not willing to let go of control.....It is exhausting. I highly recommend letting go of control in a situation that you have no control of, however, you have to come to that point on your own. NO ONE can make you feel peace until you are in that place.

It is what it is, what happened, happened. Looking back and looking forward only makes things harder.

I think it is safe to say that I have been processing this thing somewhat as a grieving process.

Denial and Isolation: Puzzlement, why did this happen?
Anger/Guilt:  at self and sometimes at God for failing me and me for failing myself and my baby.
Bargaining: More like trying to control it, Not trusting that things will happen.
Depression: Yeah that has been there, I believe too that I have a case of Post-traumatic stress disorder.
Not so much of  postpartum, this is because of the near loss of my life and and baby's life. HARD TO DEAL WITH!
And Finally:
Acceptance: Really, it is what it is, no matter how much I want it to be something else.

So upon finally accepting what has happened, what is happening and what will happen, I feel a little lighter.
Perhaps I needed to go through this process, though it seems my husband came to the end of this process on day one.
I don't know that I will always be in this place, but being here for the first time since Cleo was born is certainly eye opening and a relief.

It is funny, I tell my kids all of the time, you don't have to worry about that, you get to just be the kid, I can be the parent, relax!

I am I really that blind and stupid to the ways of God, not to hear or understand the same principle?
I was acting like my 4 year old who screams and yells until they either get their way or are sent to their room.
I suppose in any situation we can be like children as we continue to learn  and grow in this mortal existence.

So even if her due date comes and goes and she is still not home, I should accept it as it comes, the best that I can.

 I also know this:
The prayers of so many for me, my family and especially my little girl have brought miracles to her life.
I feel strongly about this.
For this outpouring of love I have not enough words of gratitude, I cannot express the love I have for so many who have showed so much love to us. Gentle words of encouragement, hugs and Prayers have strengthened me in my most painful moments.

God is so kind, he has put so many people in my life, I have been so blessed with a extraordinary support system. I can't go into hiding even on the days I want to...too many people are reaching out to me.


It is what it is, she will be home when it is time, I can relax and let GOD do what He does best, take care of me. Despite my will and what I think is best for ME, he knows how to take care of his children.
I am after all HIS daughter, as is my precious little Cleo.

Hurry up and wait!

A Watched Pot Never boils: Or A BABY IN THE NICU NEVER COMES HOME: If you want to heat water until it boils, and you watch it while you wait, then it seems to take a very long time. In the same way, anything that we wait for with eager attention seems to take a very long time: like waiting for someone to arrive, waiting for the phone to ring, waiting for a letter to come.

After a long talk with the Nurse Practitioner, and a Huge breath I have now decided my lesson on patience has just started....

This time has gone so fast and slow, and I know that it will seem that it will have gone fast when it actually comes and goes.

 But Riddle me this: Why NOW does this time feel like the longest wait in an eternal wait of waits?
A nurse described it to me as watching grass grow...

The nurse Practitioner brought it to my attention that the reason why is this:
 Up to this point Cleo has been making strides quickly,Sometimes weekly and sometimes daily, some they have been able to help make things happen by a procedure or a medication and some things are just a time , maturity and growth factor.

These are the things she has had to do or overcome:
Heart Valve open: Medication and a few days---Closed.
Lungs underdeveloped: A round of Steriods---- Fixed
Breathe on Own: Fix lungs and time
Unable to maintain body temperature/Gain more weight: UP calories and Protein in her diet---done
Learn to eat: time and readiness----She is a champ at this. On that note: The doctor has said this is one thing that can keep babies in the NICU longer and is one of the larger obstacles. He also says the speed at which she overcame that obstacle is a good indication of her neurological function.
Vasculation of the Eyes: Time only----Partially done: follow up as outpatient.
A's and B's: Time only/partially due to Acid Reflux (fixed), the rest. TIME AND MATURITY.


So really we are playing a waiting game.
Ahhh the dreaded  P word and personal virtue I am afraid I will have to learn: Patience!
Who prays for that? Oh, I don't. I pray for trust, love and other things.
Haven't we all learned that when you pray for patience you are given MORE opportunities to learn patience then you have Patience for...

I'll have you know I have not prayed for patience up to this point. I am not about to start now. I already have to have it now matter what.
I am changing my prayers that I may ask for trust in HIS time, confidence in HIS love and the strength to accept what comes with grace.
Sounds a lot like patience, no it is more specific then that. Those things will give me patience because I will trust GOD and HIS TIME.

I can not will my Daughter to get better faster then she is able. I cannot change things that have happened or the time in which they are happening. I can only TRUST GOD! And Trust that Cleo will be home soon. Then this time will be but a moment in the history that is MY LIFE. We will move on and I WILL HAVE HER FOREVER. The time that she was in the NICU will be only  that, A MOMENT.

Her due date may come and go and I may still have an empty cradle. BUT soon she will be her in my arms and I will have learned a valuable lesson. I will have practiced the one thing one NEVER fully learns only gets better at, the ONE thing NO one ever wants to pray for. PATIENCE!

I did take the time to look up some quotes about patience and found some I really loved and some that even made me laugh a little:

Take what you want, use them, learn from them. I think I will have to read and reread them until I feel able....to hurry up and wait. No matter how hard.


  “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God . . . and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father and Mother in heaven.” ― Orson F. Whitney

 “If I could store any character quality in a cookie jar, I’d store patience. Chocolate-chip patience cookies. And I’d eat them all at one sitting.” ― Jarod Kintz, This Book is Not for Sale

  “Restlessness and impatience change nothing except our peace and joy. Peace does not dwell in outward things, but in the heart prepared to wait trustfully and quietly on Him who has all things safely in His hands.” ― Elisabeth Elliot

“I realized that the deepest spiritual lessons are not learned by His letting us have our way in the end, but by His making us wait, bearing with us in love and patience until we are able to honestly to pray what He taught His disciples to pray: Thy will be done.” ― Elisabeth Elliot, Passion and Purity: Learning to Bring Your Love Life Under Christ's Control

“Think of the patience God has had for you and let it resonate to others. If you want a more patient world, let patience be your motto” ― Steve Maraboli, Life, the Truth, and Being Free 

“Trees that are slow to grow bear the best fruit.” ― Molière

 

  “Knowing trees, I understand the meaning of patience. Knowing grass, I can appreciate persistence.” ― Hal Borland

 

 

“I can bench press steam, but not fog. I just have to wait until the fog lifts itself.
” ― Jarod Kintz, This Book Title is Invisible

 

  “Rivers know this: there is no hurry. We shall get there some day.” ― A.A. Milne, Winnie-the-Pooh

 

 “Waiting and hoping is a hard thing to do when you've already been waiting and hoping for almost as long as you can bear it.” ― Jenny Nimmo, Charlie Bone and the Time Twister

 

How to Deal?

Okay I know I posted yesterday.
It was a bad day, Turns out I received information from the Nurse that differed from the Doctors.
So frustrating.
Yesterday, Cleo had her eye exam, the report from the nurse. "NO CHANGE, but not to worry".
So of course that coupled with the set backs with her more frequent grade 2 A's and B's caused me to be very upset as things were put to a halt.

So unhappy with the prognoses not to mention the the nurses lack of compassion and inability to show empathy, I called the doctor about the results and his opinion.

Doctor's report: "The Ophthalmologist is pleased with her progress in her eyes, says they have reached the level that he would be comfortable having her home with, as long as I was willing to bring her back every week to check her eyes as an 'outpatient'---- (duh, of course I'd be willing). She is having Apnea however, and that is holding her back. After 3 days of nothing but zero's she had those grade 2s. We can't send her home with those, however, we will be working with those, and you can expect that if we can get those under control that she can go home with in a week or two" I have to say hearing that was good.  So my day improved after my last update.


I must report now on her current update: This is from a trusted nurse:
She is having more grade 2s then she has in a long time. FRUSTRATING, they have been weaning her oxygen and she is simply not ready to be weaned, they have been doing it very slowly and she doesn't tolerate the changes well.

We need her on a lower flow, something consistent with what she will have at home before she can be discharged, she needs to be able to handle that change on a constant basis, (seven days with out A's and B's) on that flow. We are not near that right now.I am afraid I have to accept that this will be longer then I want it to be.
I asked the nurse to be very honest with me. She said it could happen with in the 2 weeks of her due date, but at the rate she is going I should not expect it to happen that quickly, to expect 3-4 weeks more.
With that I can take a deep breath and cry a little more, AND GEAR UP FOR A LITTLE LONGER.

How to deal? How to deal?

I am loosing steam fast, I need a renewal of energy to handle the next few weeks, which I think, realistically, is now longer then I had dreamed it would be.
When we started  this journey eleven weeks ago they told me to expect until August 1st, her due date--
 I was preparing myself for that date. Having a date in mind made things more tolerable. Unfortunately set me up for grave disappointment.

Now I have to realign my hopes and wishes and even my prayers and hope as that day comes and goes that I do not fall apart too badly. Knowing this now, I can stop giving this whole thing a time frame and just pray to have her home when she is ready, Not when I want her to be home.

Because if I had it my way she would be home today. I would have carried full term and I would be snuggling right now with my little baby.
Healthy, strong and only complaining of my lack of sleep. MY WAY IS EASIER for sure.
Only I don't get to make that choice, I don't get to control the universe, and as of today I can not even control my heart and the pain it feels right now.

As this new development has reared its UGLY head, the feelings I have are laced with a terrible smattering of guilt. I failed her, and some how I feel like I OWE her to fix things, my being there should bring her home sooner, but it doesn't change the time she needs to grow stronger, but somehow I feel like it should and it doesn't, then I feel helpless in her life. I feel so responsible despite the knowledge that I am not.

I have been able to spend much more time with her, I go up now every other night sleep over at the Ronald McDonald house and then I see her in the morning and come home again with my family so really Monday-Thursday, I spend time with her and feed her. It feels so good, then I have the weekend to regroup, we go down as a family on Saturday and then the week starts again.  

MY PLAN:

I think I will need to spend a few extra minutes on my knees and wet a few more tissues and take a deep breath and make it one day at a time.  GOD give me power to get out of bed and be kind, (and gentle with myself)  regain patience and look at the road ahead of me one day at a time.

Luckily, My husband and I have planned a little retreat this weekend, no kids no NICU and a little extra time for healing.  Though, my heart longs to be with my baby my body and mind (and another part of my heart) needs some time to get away from it all. A hike up the mountains and to breath deeply and get my mind back to where it needs to be, hopefully I can gain the strength I need to push through this heavy cloud that sometimes seems to swallow me up. I hope it will help.

It Hurts Too Much

Cleo's progress comes and goes.
We had 3 days with nothing above a grade zero of A's and B's---(Apnea and Bradycardia)
 Then last night, two grade ones and a two.
The frustration mounts as we step forward only to go backwards again.

I know we are still waiting on her eyes to vasculate, so really the count down to seven days means nothing if her eyes aren't ready.

I can not express the determination that I have to have her home in 2 weeks, but it is hard to be optimistic, when we have 3 days of true progress and then step backwards in a BIG way.
How do you hang on to the hope of her homecoming when things are so uncertain?

I have never experienced anything like this.
I have NO control of what happens in my little girl's life.
Yes, I know I have no control of my life in many aspects, but this is the ultimate test of my patience and trust in my Heavenly Father.

I want to believe that my prayers will bring her home when I want her to be here.
I want to think MY child will blow the minds of all the doctors and breach all expectations and they'll call me and miracles of all miracles, they'll say "we can't believe it, overnight she is ready to be home NOW"
 

 We still have some time yet. Two weeks isn't long I know, but no one can garentee that it will happen even then. One day after six days of no A's and B's can push her back again. I am not sure I can handle a count down when it can be so easily stopped. The uncertainty is painful and I don't know if I can push through it.
A lot can happen in 2 weeks for the better or for the worst.

Just as my confidence was building, my trust strengthened, I am thrown back.
I know it isn't the end of the world and I know she will be home, and I know we have made some incredible strides. I just want to move forward, I don't want to keep traveling back and forth week in and week out.
 I was starting to feel TOO GOOD I guess, I was bound to be crushed again. 

Yes, she could realistically be home in 2 weeks but really can a handle it if she is not, do I stop wishing for that date? Shouldn't I just want her home in the best condition possible and forget a time line? I suppose that would help.
Why does my husband take this in such great strides, he seems unaffected, while I seem to fall apart at every backwards step she takes.

I don't think I am meant to do this today....can I just go to bed and stay there until she is home?
Why do I have to care so much?

If you asked me how I am holding up today...I am not.
I am crushed.
Simply said, today is a hard day.
It hurts too much.

I want my baby home.

95,050 Minutes behind us.

It has been a while since I have updated on Cleo's Blog, things have changed- but slowly.

Today Cleo has been in the NICU for 66 days that is 1584 hours, that is 95,050 minutes of experiencing every emotion possible.

She is now 4 pounds and 8 ounces and is holding close to it over the last few days, she is 17 inches long. Almost as long as a regular term baby, though she sits on the slender side a bit. To me she is big!

We are coming out of the darkness little by little. Cleo is that bright spot in this wait.
She has been able to take all of her food on her own and is on what they call "lib feedings". Which now means she asks for all of her food when she is hungry. No more tube down her nose to her stomach.  We are very pleased with her progress.

She has had fewer spells of Apnea and Bradycardia (A and Bs). ----Apnea: Stop breathing and Bradycardia: Heart slows. These are graded from 0-3. Zero means she starts breathing on her own with no stimulation up to  3 means: needing to  have basically CPR  via Bag and CPAP machine. Scarey indeed.

Her spells of A and Bs have been fewer, but when she does have them they are worse. She has been having 1 and 2s and yesterday she needed to be bagged it was a grade 3.

The doctors and nurses believe that she has severe reflux and stops breathing to prevent the burning that comes up her throat. Can't say that I blame her. She has now been put on some medication to help smooth her burning esophagus and another to neutralize the acid, so that it doesn't burn her throat. We are hopeful that this will help her breathing problems.

She has to have NO Spells of A and Bs for 7 full days, and every day that she has one,  the count starts over. When she reaches this seven days it doesn't really mean that she comes home even still.

She has yet another obstacle to overcome.
Her eyes need to vasculate completely before she can come home, if she is on oxygen.
If she is not on oxygen then she can come home as an outpatient to check her eyes.
Oxygen that she receives needs to be controlled as her eyes heal.

To not be on oxygen she can not have A and Bs and her she must have few de-saturations, this is the flow of Oxygen in her blood. Fluctuation of oxygen is normal we all do it every day, but she needs to have it come back up, these can be effected by the apnea and Brachycardia as well.


So Cleo is doing well in required areas of her development and will be coming home to us soon.
Likely not as soon as we would like though.

If she is off of oxygen then she can come home if her eyes are not finished maturing. However, if she still needs oxygen when she comes home her eyes must completely be vascularized. This can take the longest and the eyes may be all that keeps her there. They have even said this could take beyond her due date.

Now, I am going to be completely candid,  I don't think I will handle it well as her due date comes and goes and we are still in the hospital.  Frustration mounts each day that she slips backwards with her breathing issues, because that adds another day to our stay.

I have been there when she has had her issues and I will say they are scarey. It would not be good to have her home with those issues unresolved, if I do not have the equipment to handle an extreme case of her A and Bs then there is a possibility of death. With that in mind, I can strengthen my resolve to be more patient.
It is hard to accept though, that had she been developing inside me as she should have been that she could be born today and come home with me. I have to  PUSH down that poisonous thought, it is damaging to my very soul, and gives me NO strength.

We have come this far and we have really overcome so much, to entertain thoughts of regret, should ofs, if onlys and what ifs will only pull me down.

Instead, I need to remember that this baby was meant to be, I had the courage to bring her into this world despite the risks. she is thriving, not on  her own yet, but is thriving.

The waiting is very hard, but she is in good hands. If I must wait to have her home, GOD just give me strength to be nice and kind to everyone around me...as I am not on my best behavior these days.
My heart is being pulled in two directions and it  is exhausting. Sleep is sporadic and my temper and patience is tried on every turn. 

This last stretch seems to be the hardest part. I suppose I'd feel somewhat the same way if I were pregnant as well....

So when you pray for us, pray that she will no longer stop breathing and that I can have the strength to carry this heavy load.