87 days, 2090.42 hours and 125,425.2 minutes

We entered our Journey through the NICU May 4th 2012 @ 9:38 am

I never imagined that April 30th -the day I was admitted in the hospital (5 days prior to this time), I would forever be changed.

After 87 days, 2090.42 hours, and 125,425.2 minutes we ended this journey on July 29th 2012 @ 1:20 pm, and entered into a new chapter of our lives.

 One strange thing about it all is that it just ENDED. It is strange: As my husband says it felt like we went from going 90 miles per hour to a complete stop."

It is so true, it was just over. LIKE THAT! *snaps fingers

 Upon reflection there are many things that changed in me during this process. Some of these changes have remained. Some sprouted, grew and faded into the background, sometimes revealing themselves at the worst and most sorrowful moments. Others planted deep roots in my soul purifying and strengthening who I am now. I don't know that I will ever be the same.

I do imagine that the changes made in me will sometimes be forgotten for short moments. But I hope will resurface again. I believe no one can come out of any kind of trial, (be it a loss or a triumph) the same as they were before they encountered such a moment. The outcome is not always the best, but hopefully for most of us it purifies and strengthens us, and we come out better and stronger and a person of real substance, able to set aside those trivial, though sometimes necessary pursuits of life, having grown that much more.

I admit there are some seeds of hurt and anger and (perhaps some others still hiding) that I seem to coddle now, not yet ready to let go of. I am sure they too will fade and die, if I can move past them. As more time passes perhaps I will let them go.
There in lies the workings of a growing and learning soul.
We arrive at one station in life after a bumpy ride happy to have arrived at your destination, not knowing how long you will be there, when the next trip will be or how long you will be on the next train again.
Arrival brings peace, finding peace in the journey is the hardest part.

Some rides are short and smooth, pleasant, some are terrifying and rattle you to the core. Making your arrival that much sweeter.
Peace can be found even in the most turbulent time.

So my arrival now consists of me finally holding a baby on my lap as I type frantically trying to put down in writing the things that sit in my heart busting to be out.

I LOVE HAVING MY FAMILY BACK IN ONE PIECE!!!! Love love love it.

Although I am tired from the extra work that any new baby brings. The exhaustion of fatigue and lack of sleep is much more doable then the heavy load of emotional torment, loneliness, anger and guilt  I carried for a time.

The ups and downs of the NICU life is unpredictable,  inescapable and very volatile.
NO matter how many good days you have, you are always on perched on the side of the cliff hoping not to fall off again.

Having that behind me has allowed me now to clean up the mess that is my heart and piece it back together.
None of the pieces fit quite the same. But like I said I am forever changed. Some may even notice, I am one who wears my emotions on my sleeve. Willing to share with anyone willing to listen my thoughts---- not any longer. I am not that person anymore. As long as I remember this:
NOT everyone wants to hear it, or knows what to say. Perhaps I will be more guarded.
I can't seek refuge from those who cannot offer it, sadly a lesson I learned too. I can't be hurt if I am more selective with whom I trust my heart.

Okay some of the other pieces of my heart was the part my family lost for a time.
When I was home I was not here. Physically I was here with them, but mentally, emotionally and spiritually I was not with them. It was too hard, to mundane too demanding. I couldn't be in the moment like I needed to be. This division in my soul was taxing to my family, though they may not have been able to pin point it, I can't deny it.

The week that I got my baby home I did something for my kids just to give them they pure joy that they needed.

Knowing I would not go camping this summer, we roasted marshmallows and had s'mores over our gas stove, I set up the tent in the play room and found some sounds of camping on the computer (crickets, fires and forest sounds). Sadly, this was the first thing I did to help my kids really enjoy the summer, that I was not obligated to do. Something spontaneous and fun. It was so nice to be me again!!! And do something just for the pure joy of it.

Before I walked around like an empty shell, hallow and yet heavy.
Now I am full, light and more capable of joy.

Don't get me wrong, It wasn't that I was incapable during this trial to have joy and peace, it was just harder and I had to dig deeply inside to find it. When I did have those moments they were rare gems that helped me endure that much longer. Having a baby in the NICU, whether it be one day or 5 months is a consuming, insatiable hole that grows bigger as time passes. I can't say that for every one, I can't even speak for my husband, but as a mother, my heart ached and longed to be with my little one. I could physically feel the pull of my spirit, body and soul reaching across miles while my" little bug" was not home.

I am busier then ever but my soul is happier then before. I am changed and renewed.

A few lessons I learned: (Some were surprises along the way)

 Patience is a point of arrival. It is not something that you have so that you can endure, it is that thing you get AFTER you have endured. Before patience, it is hope, trust, faith, love acceptance, and just plain waiting. We have patience for different things in our lives, not everyone has it for the same area.

Not everyone will listen or hear what you have to say or feel. When I am approached I will not invalidate someone's pain by trying to make them see the other side. Just because they feel one way does not mean that they don't have an understanding of how things are and really should be. "yeah but, you don't want her home until she is ready" invalidates me, when I have expressed pain when she is not in my arms yet. NO amount of words can change the way I feel. NOT everyone will be safe to confide in. Even those you thought you could trust:  Lesson learned.

Gratitude! Someone always has it worse.

Only days after our little bug was home, I received heartbreaking news of sweet little boy who passed. He was one of the room mates of my little one. Although, I didn't know the parents well, I wept that day, and still do when I think of what pain they have suffered. I have since become friends with the mother of this angel. She herself has been gracious and loving toward me and my baby, even in our good fortune she has been so kind, and seems to be filled with peace. I will always have a very special place in my heart for her and her son. There is a bond that can be found among the families in the NICU, a sense of hope, longing and praying that is abundant and apparent when you look for it. We found it.

I am so grateful for my little miracle, as we have now closed this chapter, my blog will still be going, though its contents may dull and news lesson there is still things to be said.

The out come of my little one's premature adventure into the world is still unknown, she may have long term things that she will need to over come, or she may not. Only time will tell.

We do know this:
She only has one working kidney. And will need extra follow ups for this.
Her vision as of now, seems to be okay, but is still to be determined.
We won't know yet if their will be delays in other areas, but we shall see.

I have, however, had to chuckle as I now have her home and many ask me HOW OLD IS SHE?
I have a mix of emotions, trepidation, and pride.
I don't want to have to explain that my baby is 3 and a half months old, and looks like she is just days old.
I have to explain: well she was 3 months early.
The pride comes from the journey we fought and over came, the trepidation comes from the onslaught questions that may follow.

As it is, I am over all happy, relieved and relishing the life that is mine.
And I am indeed grateful that OUR little Cleo is home at last.

HOME AT LAST!

It has been a week since I posted....wow, that went fast!

Well, SHE IS HOME!!!!

Let me give you the candid and true events that  happened in the process of getting this little miracle from the NICU to our home.

Friday night, my last post I was filled with anxiety and excitement. I knew it was going to be a hard night so I even opted to sleep on the couch, so my husband could at least get the rest he needed.

As soon as I turned out the lights and rested my head my brain charged forward with an unforgiving force. I couldn't stop the onslaught of thoughts that attacked me and robbed me of my sleep.
"Was this crisis coming to an end for me? Was my family going to be together again? Was I going to be able to care for my child at last like a mother should? Will she be okay? Will I be okay? I have so much to do."
I couldn't believe we were actually going to be out of this darkened place soon. I would only hope my heart could be put back into its rightful spot and I could pick up the pieces and put them all here into my home. Being torn into two places is truly exhausting and impossible to continue for great lengths of time.

With the help of Melatonin I slept for 4 hours. 12-4 am. NOT MUCH.
I woke up at 4am my head swimming with thoughts I couldn't shut off again to sleep, I didn't want to take another melatonin. Nor did I want to start all the projects I needed to do, I really just wanted another few hours asleep, alas, it evaded me. So I did catch the Olympics swim team, That was good distraction (note though, that watching the US swim teams is NOT relaxing.) I finally started to fall asleep when my daughter woke up at 6:30 and her TIP TOES up the steps was enough to jolt me from my precious sleep. I was doomed. Frustration of this lack of sleep would be my enemy this day and the next two days to come.

Saturday was a stress filled morning for me, I felt it prudent to get caught up on laundry, dishes and other cleaning projects that were mundane and proved to be impossible considering my weary mind, soul, heart and body. I pushed through only to find myself nearly falling over from the weight of the events of the last two months the lack of sleep, excessive worry and excitement mounting. I fell into my bed and slept, for what seemed like hours, but was ONLY fifteen minutes. Rats.

I don't want to downplay the excitement or happiness I was feeling at this time. But I knew I was about to room in with my daughter for the first night with her monitors and oxygen. Plus, the unending instruction I was about to receive, then after that, I NEW baby in the house. As we know that is the beginning of sleepless nights for yet another reason. MY BABY was finally coming home and I was about to began a new chapter of my life on very little sleep, this would have been easier had I been rested.

I think I will skip to the night of Saturday July 28th. Let me make this simple by saying this.
Rooming in for me equaled NO SLEEP. Her home monitor wasn't picking up correctly, the oxygen from the wall was loose and the alarm for her oxygen levels was set too high, too loud and was extremely sensitive.
Having had no sleep. I finally got all the bugs worked out by 5:00 then was awaken by her monitor at 6:30. NO I am not joking. This means I have now had an hour and a half of sleep in 30 hours.

I was in with the nurses asking if they could PLEASE keep my baby until she is off of oxygen. Thinking if this was my life for the next 2-3 months or until she is off the monitor there is no way anyone can function on this amount of sleep. I wanted her home, but not like this. There is no way I could care for my family much less my baby with this amount of sleep.

Let me move on: The good news is things are better, we have been getting fair amounts of sleep.


So after many instructions that my husband understood and absorbed, because I could not.
We packed her in her car seat and we wept and we smiled and we wept and we laughed. We hugged our friends, our favorite nurses, minus our night nurse who was sick the week that she was to go home.
SO SAD! Truly sad, she has been caring for Cleo since day two, and has been able to help her in ways that the Doctors could not until she stepped in with my Day nurse.

I will post pictures now and perhaps give more details later as my family is eating, and I am hungry.
I want to tell you more about what it means to have her home.
And how the transition has gone. So much to tell and so little time.

This little Girl is what all the fuss was about, she is worth it, OH SO WORTH IT!

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.