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!