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.

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.

The Last 100 miles

Ever taken a long trip and the last stretch of road is the longest and hardest stretch of road? That last 100 miles. Where you have to think about not speeding, your kids start whining (more then usual) and  you feel like you can't spend one more minute in the car, that is where I am now with this whole experience.

The wait has been so excruciating, I have traveled a LONG stretch of road and Cleo has surely come a long way. I can honestly say the time has gone so slowly, then it was suddenly behind me. Today marks her 35th week gestation. Though she was born almost 2 months ago.

She has hit the "feeder/grower" stage.
This is that stretch of road. We are on the home stretch, and yet it feels like we have a mountain to climb and there is no way I can wait any longer, Cleo's nurses have told me that most of the NICU parents feel this way in the end.

There are reasons for this. She is starting to eat, we can hold her, WHENEVER we want, she is gaining weight and looks like a normal healthy baby, only a tinier version. So what is the hold up? When can we have her home?

When she eats all of her food (milk) orally, and has not problem for seven days breathing, (remembering).
We are just now starting this, it is a slow and steady process. ARGH! Not Cleo's fault, from what I have been told she has excelled in this area, beyond normal expectations.

However, last night I fed her a bottle and there was so much I didn't know. She stopped breathing for a few seconds and nurse who knows Cleo very well caught it just from the look on her face. I thought she was just sleeping. Scarey...I see why she needs to learn these skills before coming home.  I can't rush her, but the time is bearing down and me and my heart is aching even more each day to bring her home.

We did cross a VERY big milestone. She now in an OPEN crib.
This means we can hold her when ever we are there including my kids.
She is still so tiny in her bed, but we are indeed seeing light at the end of a DARK tunnel. Though, we do not know how long that tunnel still is. At last, Hope is truly on the horizon.

On our last visit to the Hospital my kids and my dad were able to hold Cleo for the very first time. It was a tender moment for me. Wish Brian Had been there to see it, but I was coming home with my girl's from St. George.

Her she is in clothes! Yes Clothes! The nurse posed this picture for me, she is an amazing nurse!

Seven weeks down and counting....

Saturday the 23rd of June. My Husband and I were able to get some time alone with little Cleo.
It was a great visit! Heavenly is the word I'd use at this very time. Cleo had a wonderful feeding session, I actually got to nurse her and she actually ate. She had milk dripping out of her mouth and a content "milk drunk" look on her face. She didn't have the strength to eat long, but we do know that she is ready  and has the skills to do so, she just needs to build up the strength. What an incredible step we have taken together!

I felt like her mother!

After that visit I called to talk to her night nurse and she reported that Cleo had gained 4 ounces in one day! She is now sitting at 3 pounds and 12 ounces, we are almost to the 4 pound mark. That means OPEN crib. No more Isolate!

She still needs a high flow oxygen.. She is having fewer of what they call As and Bs, these are times were she holds her breath and stops breathing, the concern is always if she will remember to breath on her own, so far she has done so without intervention.
The goals is to have no As and Bs for seven days and continue to learn and have strength to eat orally wether it is by nursing or a bottle.

She is now over 34 weeks gestational and almost 8 weeks old from her birthday.
 We are looking at 4-6 more weeks, we have already gone through seven, and I must say, that time has gone much faster then I dreamed it would. I am relieved. We will soon have her home with us.

Open Hearts, Open Wounds.

Tues. June 19th,  as I arrived at the hospital, driving alone, my heart sunk and I had a feeling of incredible urgency overcome me. I am loosing patience I am afraid. I was happy to see my baby, of course but I knew it was just a visit and I'd have to leave her again. That made my heart feel heavy. While there I had the chance to hold her and help her learn how to feed. More of an introductory course. She was very interested and immediately sucked. She isn't ready to actually eat or get what she needs, but her interest is indeed a great sign. She is gaining that instinct need for any babies survival. Best of all she knew who I was.

She gave it her all and they rewarded her by filling her tummy using her feeding tube while I held her. She sucked fell asleep woke up sucked and fell asleep. It was amazing. The incredible part too was when I came into the room she started smacking her lips to the sound of my voice.

I finally felt like her mother. She knew me from all the other voices and touches and smells around her. A fear that often overtaken me when I thought about my little one being cared for daily by others. Especially given the intermittent times I could be there. I felt a little more whole. The occupational therapist that was working with me was impressed with the quick response she had when she was put in my arms and I was holding her skin to skin. "What a smart pup!" is what she actually said, I thought that was funny! She told me a story about a mother who lived in the Four Corners area and couldn't be with her preemie for 3 months, and her little one took to her mother like a duck takes to water. After not being there for so long, I think that is incredible.

God has a way of imprinting us from utero with the knowledge of who our mother is. Amazing to me that those ties can not be severed no matter the time away and the other smells, sounds and sights that a baby may encounter, they know their mother. God is indeed a loving God, when he can give us the gift of love and belonging from conception, she was with me for 7 months, but I had no idea that that time was long enough for her to know me.I am grateful that God has given each mother that gift.

I felt robbed of that time in the hospital to bond with her only seconds after she are born, I thought I could never get that and  yesterday I did.

After I had some time with her, I went to do something they call survivor beads. You get a bead on a necklace to mark all of the milestones of your baby's time in the NICU. No one else showed up so I had one on one time with the NICU support parents. It was two women who's children had spent time in the NICU, both of these women had done it twice, their survivors were ages 8 and up. I was able to talk about everything I had felt and was going through and they were able to understand me. And advise me and cry with me. THE PROBLEM was it opened all the wounds I had carefully and hopelessly placed a small amount of scotch tape on to make it through my day with out falling apart daily. MY heart began to ache, and I began to feel again.  I didn't realize I had been simply living in survival mode/crisis mode. No wonder nothing was getting done around here.

It has taken me two days to replace the temporary seal over my aching heart. I can't fall apart like that everyday it is exhausting and painful. I am sure anyone who has dealt with any kind of crisis knows exactly what I am talking about.

 I did the same thing with my loss of my mother almost 15 years ago.
Only those wounds have a better seal and the it stays on longer. I still ache to talk to her...that pain never quite goes away. But it gets easier most days. I have 3 other children and with each child I have had days where I have mourned with a fresh pain the loss of my mother. I haven't done it in the same way with this one. I do miss her, but it makes me wonder, is it because she is there with my Cleo? Perhaps so. And maybe even my grandma Pendleton and my Grandma Cleo Gentry are there to keep her company when I am not.
 It provides comfort to ponder!

Making strides!

Cleo is on a high flow oxygen cannula (tube under the nose) and is receiving 29%  Oxygen and is doing very well.  So that means she is breathing on her own. HOORAY!

She is sitting at 3 pounds 2 oz and 15 inches long.

Last week  she had some strange green urine, it really made every one scratch their heads.
After MANY tests, it was discovered that she had tiny kidney crystals (stones). Poor thing.
The green tint was a reaction from calcium and phosphors deposits. (Can't explain more about why it is green). It was because she was not absorbing the calcium that she was receiving in supplements in her bones.
So she had calcium deposits building up in her system.

In utero, the placenta actually balances all of these nutrients and helps with the absorption of the calcium that is needed for the baby's bones. So this is a hard thing to replicate out of the womb.  They have resolved the matter and she is not having problems. Although the poor thing did have to pass them. They reported that she did have and evening where she cried and appeared to be in pain. A does of Tylenol and some sucrose helped her through that time. All is normal and any problems with her digestive system  have so far been ruled out. That is a relief to us all.

We went to see her on Saturday and she looked so wonderful, she even looked bigger to us.
I took the opportunity to hold her and she started rooting and smacking her lips as soon as she was placed in my arms, it was right around feeding time so she was hungry.

It is incredible that she instinctively did that when I held her.
The nurses have said she is ready for "non-nutritive feeds".
That means she can learn to latch, suck, swallow and breath.
Without receiving an overflow of milk.  Just enough for us to learn together.


This is a huge milestone for BOTH of us.

I have hated pumping and have just been hanging on to the hope that this day would come and that we would be successful! I am just praying that we will figure it out.


OUR REAL GOAL NOW IS TO GROW!!! PUT ON THE POUNDS AND GROW!

To be discharged from the hospital she needs to do the following:

Maintain her OWN body temperature. (This is where weight gain comes in handy)
Drink from a bottle/breast.
And be on little/ to no oxygen support. 

BIG DEAL!

WE HAVE A 3 POUNDER!!!
3 Pounds 1 ounce to be exact!
To double her weight  she will need to reach 3 pounds 14 ounces! We will get there!

She is currently on a CPAP of 5%, if she does well on that she will be moved to a high flow nasal canula.
This means she will be starting to get ready to eat from a bottle and even start to learn to Breast Feed.
As of today the nurse reported she has been sucking on her binkie, a huge indication that she is preparing for this next big step. I'd say this is a big deal!

We are excited to see this progress!

I don't know how we will work out the logistics of teaching her to breast feed. I guess we'll figure it out.
Just wish she could be transferred to a hospital closer to me. Oh well!

Comfort, blankets and little roses too.

Something no one ever tells you:

You know that reaction you get when a loved one dies and no one knows how to talk to you?
Well, giving birth to a baby 13 weeks early resembles that same scene.

 Few think that it can be a celebration of life. Instead there is this sense of impending doom, grant it, I feel it too. But mostly I feel hope, or am trying to. It helps when others offer it more freely!

There is little "congratulations on your new little one", there IS however genuine love and concern.

I think I mourn now, how it was supposed to be. I'd love to have the work and fatigue of caring for a new little one now. (I will have that soon).  Or (not to be selfish) a little pat on the back would be nice, especially because I beat my self up with failure and guilt over this whole thing already!

It is hard to stay hopeful when I have nothing to remind me that her birth happened, she is here and she is really a wonderful addition to our family.

I have an empty crib, a drawer full of baby clothes that won't fit her, and an aching heart longing to have her here at home.

I have wanted to go get her a drawer full of clothes that would fit her, a new diaper bag and a wrap to carry her in and yet I hesitate, and so does my sweet husband, there is always that thought in the back of my head. (I won't type it, you know what it is).

But when she does come home, that is most likely to really happen, we need to be prepared. I know we have time yet.

But something tangible...

I don't feel like I need gifts or praise really, that isn't the point. It is simply this.
The symbol of hope. A physical reminder that you are waiting for the best to happen.

We stayed for 2 days at the Ronald McDonald house a few weeks ago and when we checked out they presented a gift to us for our little girl. A blanket with a small little stuffed animal tied to it.

It was the first gift I had received for my little girl, The first tangible reminder that she would be with us. I didn't' expect to feel so flooded with emotion at a gift frequently given to you when you bring home your little one for the first time. It was like someone was saying to me "Congratulations on your little one, we are so happy for you, and YES, she will be with you"  Something I guess I was not aware that I was missing, and actually grieving over the absence of.
 Thank you to the person who lovingly donated time and money to make that blanket for us.
I hugged it as we drove home and felt close to my child. I guess this was what I needed.

A few days later, a neighbor brought over a blanket she had tied for Cleo. I thanked her and told her it meant a lot to me. She said, " we are so excited for you!" As I closed the door tears filled my eyes and I hugged the blanket and put it neatly in her empty crib. I am excited to have her too.

It was another symbol of hope! 

  It turns out they offer a different kind of comfort to me.

Then a little neighbor girl, (5 years old) Brought me some roses she had picked from her house, right at the bottom of the roses and brought them to me,  "I brought you these flowers because I know you had your baby!" there was no look of "I am sorry", or sadness,  she was offering a very thoughtful loving gesture that melted my heart!

Don't get me wrong, the tender, loving concern for me and my baby are truly and deeply appreciated. 

But to see things in a somewhat "normal" way makes me hopeful that things will be okay. 

Sometimes a look of sympathy isn't always the best medicine for a grieving mother, who can't see and hold her baby.

I need permission to be happy that my little girl IS here. 

These gifts, though seemingly small, offer just that.

______________________

~So I decided while shopping for kids summer clothes, I'd look at some preemie clothes,

 Love Kid to Kid for that, they always have a good selection.

I found a lot of cute pieces, but one in particular that had lady bugs (for my Cleo-Bug) on it,
so I couldn't resist.

Something about having some baby clothes for her makes me feel like I haven't given up.

They are also sitting in her crib waiting for Cleo's homecoming.

I wanted to portray just how small preemie clothes are. The outfit next to the preemie outfit is 0-3 months clothes, The ladybug outfit, I am sure for a while will even be big on Cleo WHEN she comes home.

I love imagining her in them, I just makes me smile.

What a Great Day!

Yesterday Was  Beautiful Day!

It was nice to have a Sunday with my WHOLE family even if we were not at home.

We delayed our visit to see Cleo until Sunday due to blood transfusions. 

We went up to U of U Hospital and attended the short Sacrament meeting there. 

The kids got to touch and see Cleo again! 

Brian and I were able to each get time to bond with her. 

She was alert and awake for us. (Not in this picture) She cried, sneezed and yawned.

Brian and I were able to hold her and look into her eyes!

It was truly Magical!

She knew me, and I knew she needed me and knew me!

Just what I needed to heal my heart and soothe my soul!

Cleo now weighs 2 lbs, and 12 oz., 14.5 inches! Of course we are a while away from were we want to be. 

She has done well with her blood transfusions, I did not see what she looked like before the transfusions, but I have been told she looks much more pink and healthy. 

She does have blood dinged urine and they believe she may have some renal stones, they are doing the appropriate testing to find out what it is, if it is not that, they suspect a UTI, and have already ran the cultures we are waiting results on all the tests. 

She is only receiving respiratory aid on a C-PAP, and only receives puffs of air periodically, to insure that she keeps her lungs full, otherwise she is breathing on her own. 

Transfusion and Confusion

Today Cleo is in need of a blood transfusion. She has been a little pale and they have been monitoring her closely. Turns out her oxygen saturation levels have been unstable. She will need to receive some red blood cells to help level her off. Red blood cells carry oxygen in our bodies. These little ones do not produce their own. It is common for preemies to have blood transfusions, just not something they want to do. It comes with some possible risks of infections. She will be receiving the transfusion for the next 3-6 hours, and will have to stop her feedings for 6-9 hours, (so much for weight gain today).
The up side is that babies generally do not have the immune system to reject the transfusions that adults do.
So a transfusion is actually accepted more readily.

I was planning on a trip to see her today, in light of today's procedures, I think I will wait until tomorrow, I am afraid that just looking at her just isn't enough any more. I need to be able to hold my little bug. It has been a long two weeks and I think waiting until she is more stable is a better option. I'd hate to go and have her taken from my arms or not be able to hold her at all.

It is simply heart breaking to go through this. I hate to see my little one going through so much in this earliest part of life. I simply feel powerless and want nothing more then to rescue her.

OTHER THOUGHTS:
I think the questions, or thoughts that keep running through my mind are these:

Will my baby get used to what they do, who they are, and does my presence even matter? After being away for so long does the sound of my voice, or the touch of my hand give her comfort? Will the lack of being held affect her development? It is so hard to not be a part of her life on a daily basis. I know that she is still developing mentally, and maybe these things will not shape her permanently. Sometimes I feel so distant from my child that it will be like an adoption when I can finally bring her home. I suppose though  that it would really be no different then bringing home a newborn. She is supposed be in Utero right now anyway, growing, and developing. She isn't supposed be getting any of this stimulus, and interaction with the outside world. She is supposed to be feeling the rocking and moving, hearing the sounds of my voice, or the daily sounds of my life.

Instead she is hearing the beeping of monitors, feeling no movement and hearing only the voices of the nurses doctors and all the other things in the hospital. It is hard not to wonder about these things.

Candidly Speaking:

 I can't help but feel some bit of guilt for bringing my baby to this world so early.
As my body failed, I feel like I failed her.
Yes, I know it isn't my fault LOGICALLY, I know this.
But how do you escape those feelings of failure and guilt?

Four years ago, I was warned after my son was born @ 35 weeks,  that I would likely have a preemie and
get pre-eclampsia again. I heeded that warning and DH and I decided that 3 children would be our lives.
We were okay with this, to a degree.

However, three and a half years later our plans changed as I began to have dreams each night about another child on a daily basis and felt the promptings of the Holy Ghost along with these dreams, until I finally came to my nerves and told my husband my thoughts, we knew what that meant. We were to have this little one in our lives. So we did and here we are. ( Now, it is hard not question what I know to be true, although I know what I felt.)

I could never have anticipated such a difficult challenge. I think if I had known that this would be our fate, I likely would not have made this choice, in spite of my answers.

But alas, here we are in the presence of daily miracles. Dealing each day with the ups and downs of having a baby born before her time. I was given comfort the night before she was born that I was worthy of the miracles that I would see, and that we would be HONORED to be a part of them. Honored was the word spoken to my mind.

Cleo has been my miracle, each day that she is alive is a miracle.
I admit, I have never prayed more, cried more or been more elated in my life.

I cannot describe to you what it means to go through this. I don't think anyone can understand it until they themselves have passed through this.

I DO know that Christ himself has felt and carried this burden for me. Thank Goodness for my testimony, knowing I am not alone. God has been and will still carry me through this.

I have an overwhelming love for my little girl and my heart longs to have her in my arms. Once I have her home I MAY NEVER LET HER GO! My little bug has changed my life forever.

GROW BABY, GROW!

Cleo is officially one month old last Friday!!! I can't believe it! THIS IS HUGE!


After Cleo's last little scare, she was put on a round of steroids. They cleared her lungs and she has been doing progressively better. She is currently only receiving 20% Oxygen by Cpap, and is currently receiving NO pressure to help her use her lungs, which means she is using them as she should. She is at her full feeds and is doing very well. I was unable to hold her this last weekend. I thought I had a cold, turns out it was a tree that went into full bloom this last week. YUCK! So I miss my little bug, Hoping to see her very soon. So hard to have her away from us.

What she really needs now is to continue to grow, and stay strong in her lungs. GROW BABY, GROW!

They say it is a roller coaster ride-hang on!

They say it is a roller coaster ride-hang on!

Two steps forward, one step back!

Cleo is stable and we are just back where we were a about a week ago, all of the lab tests for infections have come up clean, we believe she just wasn't strong enough to breath with out more assistance, a round of steroids will be started to help her lungs get stronger. Thank you for the prayers.

Now for the hard part!

Although, Cleo has been doing well, I did receive a dreaded phone call.

Cleo's Doctor called to report that her lungs had collapsed this morning and that she was re-intubated (Tube placed back down her throat) To help her breathe. They reported to me that she was just not acting like herself and was pale. She has been a healthy pink. But she was more lethargic and had been struggling today.
And  the x-ray of her chest looked bad. 

With all the good news I was starting to forget I could get news that frightens me. And brings me once again to a hard place.

They have run some tests and haven't found out what it is. They suspect an infection. They will continue a series of tests until they find out what it is. One of these tests include a spinal tap, (my poor baby)!
They do have her on an antibiotic already as a precautionary measure, and all other vitals are looking good.
So we will just hope she decides to fight!

WOW, this is hard!

Hitting a milestone

I didn't get out my camera until after I held her on Tuesday, so you can't see the biggest change of all here.

Cleo's breathing tube has been removed. She is currently receiving Oxygen through her nose. 

This is great news, It means less chance of infection, less change of damage to her lungs and just a happier baby, who is progressing by leaps and bounds.

They have been concerned for her lungs and the secretions that she was producing on a regular basis. 

They hoped not to start a steroid treatments to help clear here up.

She must have known what she needed to do and started really breathing on her own. She responded well to the Diuretics they put her on for her chest.

Her x-ray was more clear, and her breathing so good that they removed her tube and now she receives oxygen and minimal pressure through the tube in her nose. 

Every nurse and doctor were so excited to see that she had progressed

 and improved in such a short amount of time.

If they seem so happy, then I must believe she is doing well.

I did get to hold her again on Tuesday, it was so great. They handed her to me in a blanket where I could hold her just like you would any baby. I got to look at her face to face and study her every part for the first time.

Kangaroo holding has its pluses but this felt different. She had her eyes open and I got close to her face so she could see me, (sure her vision is BAD) and talked to her. For a moment it felt NORMAL. Something I needed to feel. For the first time I could let go of the fear in the back of my mind and just BE in the moment. I have yet to do that. I fell in LOVE even more with little CLEO-BUG!

ADDED NOTE:

Every Wednesday marks her Gestational age: This week is 31 weeks.

Every Friday marks the day she was born. This Friday she will be 4 weeks old, and she is doing well. 

We are grateful for that!