Preemie Power

For the past 3 years I have been grieving and quite frankly, it has been exhausting to even do anything else. It's like you are always running on empty and you can't seem to ever feel satisfied or full. I feel as if I just can't quite catch up...ever. And maybe I never will experience rest until my work is finished here upon this earth....

Having Poppy one month after Ollie died was exhausting. My hormones were a mess, I was a mess and I was intensely grieving. My body mind and spirit were all confused as to what just happened. 

shock. 

disbelief.

nightmares.

horror.

madness. 

loss. 

death.

birth.

All these heavy emotions have left me feeling tired mentally and physically....Oh yes, I am still tired.

My goodness.  Grief is all consuming. unwanted. and life long.

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Then, my life wasn't exciting enough so Mr. Loxxley decided to liven things up with his entrance!

I feel like I didn't quite take it in and accept all that was happening once my water broke at 21 weeks. I just went into survival mode and did what I had to do to keep him safe.

It was a ANOTHER GIANT SHOCKER.

Seriously, when my water broke and we met with that first maternal fetal medicine doctor who told us we had 2 options,

1- terminate the pregnancy by having an abortion

OR

2-continue with the pregnancy and I and the baby might both die.

So, we might have to say goodbye to another child or Chris might have to say goodbye to me and a child and raise Poppy alone......

Neither option looked very promising, but Chris and I were not going to decide whether our child should live or die by terminating the pregnancy. God was in full control. We were going to go full force forward and hope for another miracle since we didn't receive one with Ollie, we thought had a fighting chance.  The doctor made us feel like the first option would probably be the safest and best. Yes, we understood that my life was in danger of a deadly infection but, if I was at the hospital they could monitor my failing body hourly. This decision was hard considering I had a toddler at home who had already experienced a crazy life thus far yet, it felt right for our family--thanks to my mom who jumped on a plane that day to watched Poppy and offer us much needed moral support!

This Doctor made me angry and I wondered how many other parents were going in there with no hope like us? I understand the statistics the doc was providing but, he could have offered some HOPE and told me of children that do survive. Maybe my situation was very unlikely that the baby would survive or that I would contract the disease---but I didn't and we got our miracle!!! I sure wish more hope was offered and more trust put in the higher power--GOD. Miracles happen daily in hospitals. Hope is all you have in the end. Remember this. If I didn't fight for my baby, no one else was going to---except my sweetest nurses on the planet. Keep fighting mommas. I know there are moms who will be experiencing this while reading my blog. I tell you to hold strongly onto that HOPE and FAITH in your child and go forward like a tiger! [an yes, unfortunately there are tragic and sad endings--until you know the end, keep fighting]

Look at my precious miracle. I don't think I fully realized how amazing he was at that time. I was still grieving hard for Ollie. His head was the size of a lemon...so tiny and so precious straight from Ollie!

2lbs. 5oz.     27.6 weeks gestation. Half hour after a one push breach vaginal delivery

I have had some bottled up feelings lately about Loxxley, the NICU, and how scary and horribly hard I fought through it all, as well as how hard Loxxley fought.  I am proud of myslef for fighting for my baby after losing Ollie only a year earlier. Going through this was more traumatic than I had wished. It's intense and it was so dang scary.

Life can be so tough and look so helpless. I am here to tell you all reading this,

YOU ARE STRONGER THAN YOU EVEN KNOW.

KEEP FIGHTING YOUR BATTLE. 

KEEP PRAYING TO THE ALMIGHTY FOR HIS UNENDING POWER AND LOVE.

DON'T YOU EVER GIVE UP.

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Loxxers

Poppy made up a nick-name for Loxxley and I think its just so cute...Loxxers. 

So he now goes by, 

Loxxers

 Loxx, 

Little Loxx,

Loxxopher-after Christopher

and baby.

I thought I should update on our miracle little man since he is doing so well.

I know so many of you followed the story during those scary times when we thought he wouldn't survive....and I thank you.
 Well, today he is surviving and thriving!
He is about 20lbs.

He is almost crawling and probably the happiest baby around.

He doesn't stop smiling.

He tries to cry and be mad, then he has to smile--it warms my heart...
Oh, and I almost forgot, he is sleeping through the night!!!
YAY!
Never thought the day would come.

And yes, you see he's got some nice chompers, nine to be exact.

And yes, he's still the hairless rat!!!

Strong Humans Are We

It is interesting to me how the last 2.5 years have been the fastest years of my entire life...obviously because, so many large mountains have manifest themselves in our once, care free path.

I am actually blown away with how much the body can go through and still survive, yet how fragile it is and how quickly it can die. Ones soul can also take quite the beating. It is only when you are stripped of everything-you have nothing else to give, then you will find yourself and what you are truly made of--you also can find God too.

Going through the trauma of finding my precious child inside my washing machine almost dead--sorry I know its hard to read, but its what it is and I face it head on in order to one day jump through it all. And then all that comes with your child's death---I am too weak right now to go into details, and then fighting to find a reason to stay alive yourself. I truly have been to the depths of my rock bottom many times over- I hope, I thought Ollie's tragic death was all I could handle.

Nope.

Then I had the sweetest 2.5lb miracle. And that came along with so much will to persevere....man it was so so hard to fight through it day after day.

No wonder I am still tired?

Chris brought to my attention yesterday, that we need to give ourselves some credit for what we have been through......two super duper gigantic life changing events.

Yea, I already cried uncle with Ollie and threw in the towel.
Whats up with that God???
How can I be expected to do more when I am already finished....so I thought.
Seriously?

Well, I am living proof you are all stronger than you know. You really truly are. Don't ever doubt that. Have some faith in yourself--I telling myself this now. I sure had no idea I could live through all of this.....and I know the world is just getting more and more rotten, so I know there are more trials in store for me. I couldn't have done it without my hope and belief in our one true loving God. I know without a doubt He is aware of you and I, even though I often don't see it. I have had a lot of love shown to me and I believe it is all through the power of prayer and others being inspired to share their love.

THANK YOU
THANK YOU!

I fight with the powers of the universe to live on earth and to live happily and mightily until the breath is taken from my body.....

Here's to life, love and 2015!

//I do know that loving God and speaking of Him is not the so called cool thing to do these days but, I just can't help it.....God is all around us. And so is my sweet Ollie boy! Oh, and I am not trying to be cool.. haha

The world is grand, get our there and truly live!! 

2009 Basil, Switzerland--where my family is form.

Answered prayer

November 23, 2013 was the day our little miracle entered this world and took his first breath. Our prayer was answered this time with this boy--a little sooner than we had hope, but none the less answered. 

Loxxley was 2lbs. 5oz--too tiny to survive, so we thought. His skin was transparent and he was pure skin and bone--no fatty meat. He looked weird and very malnourished. We were all so scared of what the outcome might be--we had heard so many stories of hope and survival, but we also knew his breath at any moment could be his last. 

So, for the next three months we held him daily for as long as we could until our backs hurt from not wanting to move an inch, thinking we would disturb him too much. I often thought of how lonely he was in that foreign incubator and how much he was fighting to stay alive on this mortal earth. So, I knew I needed to fight my hardest too, even until almost falling face down from exhaustion. 

Those months were filled with mostly pure chaos and exhaustion, but also sweet moments holding our fragile little boy--those were priceless moments in time. Pure bliss. 

I think those months-actually the last year has gone by without much thought, well, without much stopping and smelling the roses. It seems to have just flown by while I was standing there in a blur watching it all happen--of course I have been very present and in the moment, just looking back it seems this way.  I guess I might still be in a bit of a grief cloud. This last year has been very healing in many ways staying busy, something in the first few months after Ollie passed away that wasn't healthy. We couldn't bare to even wake up in the mornings to find our nightmare still true, so how could we be asked to do our daily tasks, like simply shower. We were devastated beyond comprehension. And still are, we have just learned in 2.5 years how to live without Ollie...it stinks big time. 

Since the day Loxxley was born,

I have grown stronger than I ever thought possible, mentally, physically and emotionally.

Happy Birth day Loxxley Koa Kai! You are loved so much. 

And your smile, my goodness, it never stops!!!

*Baby Update* written 10/24/13

Chris and I received very unwanted news two days ago, as we waited for the maternal fetal specialist to tell us the results of our, what we thought would be normal, ultrasound. The short version of what he basically told us, was  that the baby had no amniotic fluid surrounding it-later I called him back and ask if there was really 0% fluid and he said well there are 1-2 cm pockets, but from a medial standpoint that means zero....I felt like there was no hope on his part. I didnt want false hope, but man, that was rough news. That tiny percentage gave me hope.

Today as I sit here in my home, I am on strict bed rest-only bathroom privileges. Whoa, what a change from chasing around an almost 2 year old wild woman. I have a lot to sit and think about. You might all be asking yourselves, "how can Tiffany and Chris be handling this right now after losing Ollie?" Well, not too sure how we are. I wanted to just crumble to the floor in disbelief when the doctor told us we might lose another child, but I didn't. We left the appointment crying and in deep despair. We were both in shock. Probably still are. I didnt really listen to what the doctor was saying from the point he said no amniotic fluid....I zoned out. Had no hope. Pretty much thought my only option to save me was to induce labor-so not the case after much reading and listening to many other stories. Thank you to everyone who has sent me stories of HOPE, they seriously made my views and out look do a 180.

So, we are mightily moving forward with faith and hope. It is all we have. We have nothing else. We can not do anything to change this, except have hope or have none, and we choose hope! I am hoping and praying for a miracle. I KNOW they CAN happen, sometimes they dont, like with Ollie. Not sure why I have so much hope today after all that we have been through in the last year and a half. I feel like I should be curled up in a tiny hole shaking with fear, but I choose HOPE. Hope in this baby, hope in my body to make the proper nutrients, hope in these very knowledgeable doctors,and  hope that the baby will survive and be a fighter. I have great hope in Gods plan, His love and His timing.

So please, join me in hope. Hope for yourself, for the future, hope for life.   

**Interesting story
Last week I had an appt because I was still leaking fluid, I went all by myself and was so stressed out, I showed up to the wrong office-the other office is 45 minutes away. So, I told the nurse my reason for coming in and that I showed up at the wrong office. She suggested I go straight to ER or drive to the other office/hospital. She was very concerned, but I told her I might just drive back home. I could tell she was annoyed with my decision. I ended up going straight home and crying. I didn't want to worry about what news they might tell me. I couldn't handle any bad news. It was just too much.

We made another appt. for Monday. Chris was able to go with me this time-a tender mercy. I am so thankful I didn't have to receive this horrible news alone. Anyway, I called the nurse today and it happened to be the same one. I could feel that she might still be a little disappointed in my decision. I then began to tell her the reasons why it was just too hard for me that day to make the appt. I told her all about Ollie and the accident, and now we were facing this new trial. She felt so bad. I could feel in her voice her heart soften as I spoke. I began to cry as I told her that we have decided to not induce this pregnancy and this baby deserves a fighting chance. As I began to tell her this, I knew without a doubt I must put up a big fight.  If I, as the mother dont fight for it, who will? I feel so strongly as I type this. This baby Hebb #3 deserves hope, it deserves a chance. It is still in my womb fighting from the inside and I we must fight on the outside, it isn't dead yet. It has a heartbeat and still growing. There is hope!!! 

***We might find out the sex because females put up a better fight at this gestational age. (Just like her momma)

Not so kind

I am not so kind sometimes.

Lately, everyone I talk to on the NICU floor, seems as if their story is so horrible. Like the lady who's child had been in the NICU for only one week and she was so upset and devastated that it wasn't home yet. She said her son was suppose to go home any day. Or how about the grandma whos twin grandchildren were just born and one would be in the NICU for a day. They were so devasted and could't believe this was happening. I began to feel bad for myself. My life story just seems so horrible. and so not fair. When I tell people about the events that have taken place in the last 2 years, I just don't believe it is my life. My new life, my unwanted new life.

Sometimes I catch myself thinking to the random person in the elevator as they speak of their current situation....

well, at least your child didn't die

or 

7 days , that's not so bad compared to 100 days in the NICU

or 

at least you have some family near by to help watch your kids....

I don't mean to be so callused, but I am. 

I watched my child die.

I rode in an ambulance while my son lay in the back hooked up to tubes fighting between this world and heaven.

I washed my little guys tender body and dressed him in spider-man pjs for the last time.

I held him while he took his last breath in this life.

I kissed every inch of his dying body until I almost had a heart attack and died myself. 

I planned a funeral, my little boys funeral.

I picked out songs to be sung by Ollie's cousins at his life celebration.

I laid my precious 2 year olds body to rest.

I now have a spot to visit my deceased sons headstone. 

No, not hard things at all.....

I know everyone seems as if what they are going through is the worst. And it is to that person. I really do have compassion, but I also try to let others see that it could always be worse. I know I am not the one who needs to make others aware of this, but sometimes I do it anyway. I tell myself daily that it could be worse. I am thankful for what I do have. What I do know! The knowledge of seeing my little bug again. Eternal families, heaven and God.

Now on to some happier things.

Loxxley Koakai Hebb

I went and snuggled skin to skin with my little peanut for 3 solid hours. My back always hurts when I am finished because I try and move as little as possible so he will get the best uninterrupted sleep.

Oh, the sacrifice of a mother. Pretty much the entire 3 hours, I stare at his tiny face and his perfectly developed body. I pray for his body to heal and for him to feel peace and love from his big brother Ollie. Oh, I sure love my peanuts. Loxxley looks just like Ollie and Poppy!!!!

I cant wait until I can snuggle him and not feel like he might die. Everyday is nerve racking. I still catch myself taking big deep breathes all.day.long. I don't sleep well and my entire body is in tense knots. I don't eat well either-actually daddy bear feeds me well when I do have time to eat. I am always pumping and racing out the door. When I get it in my head that I am going to see Loxxley at the hospital, nothing can stop me or get in my way. If my schedule gets messed up by me forgetting to pump or waking up too late or the normal Portland traffic, I get irritated and antsy until I arrive at the hospital. 

In every picture he pretty much looks the same, but I can tell a difference he's gotten a bit bigger. 

Status update-one month old

Weight: 3lbs. 1oz.

Feedings: 26ml of breast milk and a bit of fortified milk too.

Cpap: Back up to a pressure of 5. His oxygen need has increased over the last few days from room air to about 25-30%. I asked the doctor what could cause this sudden change. She said he might have a lung disease where there is water on the lungs. They can give him a diuretic if this is the case to help drain the fluid. So, as usual they will continue to watch him closely. 

In general he is doing very well. He was just born too early and should still be in my tummy. He is doing normal preemie stuff. 

Everythings going to be alright

Little Loxx has not been sleeping as I have mentioned several times, he wakes up every 2-3 hours all.night.long. Having an infant for so long is wonderful, but so tiring at the same time. I have been wanting some relief and sleep.
I finally decided to call the doctor. I have tried EVERYTHING natural and exhausted my resources- I am not one to run to the doc, I try to do my own healing and research first. The doctor got him right in yesterday and I met with the PA. I told him what was going on. Basically the short of it was that Loxxley has been conditioned to wake up and nurse back to sleep. Since NICU living wakes them so often-for good reasons, they still practice this several months later. I can either wake up every 2-3 hours and feed him quickly back to sleep, or try letting him fuss a bit back to sleep and soothe himself. The PA said that either choice will be hard, but in the end he will be just fine.

little peanut has come so far

After 10 months of having a high maintenance newborn child, I have finally realized a few things:
-EVERYTHING IS GOING TO BE ALRIGHT!
-My motherly instinct usually prove to be spot on.
-God is aware and active in our lives and so is Ollie.
-Ollie left this earth too soon,  he knew how badly we needed another boy, so he sent Loxxley 3 months early!!!
-I need to chill out.
-I NEED TO PRAY MORE AND DEMAND FOR ANGELS TO BE ROUND ABOUT ME AND LIFT ME UP.

Life....

Sometimes I feel as if I don't quite get enough time to really think about things that my family has gone through in the last 2 years, we have just been surviving and dealing.

When I do sit and really think about Ollie not being in our home physically to hold and hug, and then having another child almost die due to being a preemie, I am overwhelmed with sadness and exhaustion. and in the next moment, I am happy those moments are behind me. Losing Ollie was horrific in every way, and turned my life upside down and backwards-I really went for a spin-quickly downward. Then, having my water break at 21 weeks-I seriously wanted to die right then and there, I didn't think I could take anymore-little did I know what was ahead, being on bed rest away from Poppy for 7 weeks, facing the uncertain NICU for 3 exhausting and having my mom fly up on a moments notice to take care of my family while I sit in the ugly hospital fighting with my baby for his life, has not been what I imagined as a naive 18 year old on top of the world.

Through it all I have learned a lot. I have grown a lot spiritually, mentally and emotionally-not by choice, but by force and I have hit my rock bottom-I hope. I have learned how precious our life is, I have learned to trust GOD with everything I have-I am not in control, and I have learned to FULLY LIVE IN EACH MOMENT because our days are number here upon this earth.  

My heart has been shredded, torn, and broken into a million little pieces. I have been slowly finding myself again and putting those pieces back together. My heart will never be the same-a piece is missing, but it has expanded and grown larger by having Poppy and Loxxley in my life.

Loxxley has taught me that miracles do happen and prayers are answered-not on our time frame of how or when we want, but they are answered. We prayed so hard for Ollie-he didn't survive. We prayed just as hard for Loxxley-he did survive. Not sure why, only our creator knows this-and trust me I will be asking quite a few questions when I get to heaven, but I am thankful for my 2 children who are living with me today on this earth....until the eternities, I enjoy today while trying to find out why I am here and what this life is all about.

Loxxley really is a living miracle, started so tiny, but so strong.
He went from this.....

His head was the size of a lemon-the purple thing is the nurses glove

His precious body did not look well, he was see-through and not ready to be here.

To this.....

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>>>Does anyone know how to change my blog so everyone can comment, not just people who have google+???

>>>And according to comments, there are only about 5 people who read my blog...maybe its due to the google+ thing

 

Help through the NICU

Back in September when I first found out I was bleeding, I knew this was not a good sign while being pregnant. It made me nervous, but I told my mom from the beginning, that I knew things would work out how they were supposed to. After losing Ollie, I knew all too well how quickly and suddenly a life could be taken from me. If God needed Loxxley, he would be taken-I would have been beyond heartbroken again-but for some reason, I trusted more this time.

Fortunately, things worked out to my liking and our once again heartfelt pleading prayers, were answered. Loxxley is supposed to be here. He is truly a miracle, the miracle we prayer for. His life is not yet completed and I am grateful formy time I have already spent with him.

The last few months-whoa I mean several exhausting never ending months, I have learned some things I want to share with others facing this same ever exhausting and difficult situation. The NICU is not a relaxing place to be, it is filled with anxious mothers (and fathers) quietly and fearfully attending to their babies the best they can as the doctors try to save their weak and fragile preemie.

First minutes of life @ 2lbs. 5 oz.

Several ways to help you push through and plan for the scary and uncertain NICU:

-When you first arrive in the Neonatal unit be prepared to be tired and exhausted. Every mother-excuse me, most mothers want to be with their precious and oh so fragile preemie every single minute humanly possible. For some, it is not very practical to be there every day, for me, I had to find a way to get to the hospital. I was too anxious and nervous away from him. I just thought that little baby needed me-even when there was not much I could do other than just stare and send my positive love and thoughts towards Loxxley. But do not feel bad if it is not possible for you to be there, the nurses are very skilled and take great care of your child while you are away. And the other mothers send their love to your baby too!!! 


-Be prepared to NOT understand what's going on. There will be a lot of scary machines, tubes, and words you wont be familiar with. That is okay. You will quickly get used to them and like me, will get so sick of hearing those annoying beeps and staring at the monitors and having a panic attack every time your child desats. I swear, Loxxley's alarm went off more than any other baby....it probably just seemed this way.

-Don't be afraid of the doctors just because they are more knowledgeable than you-ask every question you can to find out the medical conditions and go home and do your own research. Remember you are still the parent and have the final say. Chris and I actually went against what some of the doctors thought, they dont know everything-but they do know a lot. Trust yourself after you have prayerful meditated about the matter. After losing Ollie and then having a preemie, God has played a big part in our lives and our decisions. He is very aware.  We all need a power stronger than ourselves to call upon for help-even those amazing doctors do.

Can you believe the size oh him????
Unreal and scary. 

-Pray everyday as much as you can for your baby on your knees-I was too exhausted and rushed to the NICU the second I woke up, I wish I had done this more. I needed the quiet and peace I feel when I am praying or pleading to my God. I also needed the strength from a higher power to get me through this tiresome dark valley. God is aware and ready to help. Also Jesus Christ is there to lighten your burdens, He did for me and He will for you, If you ask. This fight is long and hard, but it will end and I hope it ends for you all in bringing your healthy baby home-if your child passes on to heaven, keep this promise with you every day until you yourself die-You Will See And Hold Your Precious Child Again.

-Touch your baby the minute they say its okay.  Chris and I were so scared to even breathe while in the micro-preemie pod, let alone touch Loxxley. We were so worried he was going to die-we had already buried one child and knew how real it was. Loxx was so tiny and fragile. We could see through his skin. He was too tiny to live-well, so we thought. I did Kangaroo care, aka-skin to skin, every single day for 3 months. I tried to do it for 3 hours at a time-this was so exhausting I am not going to lie, but my little Loxx needed it and we all know those momma bears fight hard for their young-the dad's do too, Chris did kangaroo care when I couldn't. These little preemies are so STRONG and TOUGH. They are fighting so hard, so remember to be patient with them. They are doing their very best. They will go home when they are ready. Loxxley got released exactly on his due date. 

 

First time holding Loxxley, I was shaking.

-Remember to take time everyday for yourself, something I had a really hard time with. After Poppy and Chris moved to Utah, I lived at the Ronald McDonald house-a blessing and a curse to be so close-and sat in the NICU from 9am for his first feeding until 9 or 10 pm. It was way too much for one person. I did this every day for 1 entire month. I would not recommended this approach. I would eat lunch as quickly as I could and almost choke every time, so I could rush back to feed Loxxley. I was determined to have him be breastfed exclusively and for him to take the bottle properly. He had such a hard time. After much perseverance and offering him the breast daily, I am happy to report Loxxley is now breastfed and doing amazing. Not saying he is t still very difficult and lots if extra work cause he is, but it's way more relaxing in your own home. He did take the bottle for the first 5 months. Aww 5 months of pumping, I'm so glad that's over-I know several of my friends who are still pumping and who have pumped way longer-you are tough. Keep with it mommas. It is so difficult, but it is possible. Breast is the best for your tiny preemie, but I do know for some of you it just is not possible. Don't beat your self up about it.  One of my favorite nurses, Jamie challenged me to go outside and walk on a trail or just breathe fresh air every day....it helped so much. Do this! Just get out side and BREATHE. 

And most of all, Remember to....Expect a Miracle!

Neonatal livin

So much love....whoa friends!! I sit here in the waiting room of the NICU (getting very tired of this concrete jungle and all the chemical smells) on my laptop to just get a breather and read your comments and they made me cry. I am so not strong, but your comments make me believe I am! Thank you. They mean so much to me and help me keep fighting this awful battle until I reach victory. 
I know victory will soon come. 

Many have asked me about transporting Loxxley in the air med. Well, they will not make a flight to another level 3 trauma facility if its not medically necessary, so flying is out because Loxxley is so stable. As soon as the docs tell me Loxxley can be discharged, and I hope I get at least a days notice, Chris will fly up here and drive home with us!! Can't wait for that day. It seems like 500 miles ahead of me.

Mr. Loxx is doing so well. He is just working so hard at his feeds. Poor little thing tuckers out after a few minutes and I have to constantly arouse him and kiss him until he wakes just enough for me to stuff the bottle back in his mouth. I am really working with him at taking a full bottle every.single.time. If he takes a full bottle for a day then the docs watch him for another 24 hours. We are so close. So this momma bear is hoping we will go home this weekend. Oh how I just need a break.....

<<<Hey mom, I am going to crumble when I get home, just giving you a warning>>>  (and crumble I did)

Oh and btw, most of my milk has dried up....darn. That's the best thing for this little guy right now. I need to blow this joint. Oh my. I am so ready. The nurse yesterday was so great about asking the docs if Loxxley could do a shift minimum which is basically him eating a  total of 200ml through out 24 hours. Sometimes he might take 55ml, other times he might take only 40ml. Today he took every bottle and 5 extra each time. Good boy!! I hate it here how they are so EXACT with everything and the numbers have to be just perfect and there is no budging. I totally understand that they need guidelines, but come on where are the patch adams doctors? Why can't there be any exception to 'the rule'? Not every baby is the same and not every thing works on every baby. They go on a general scale for everything....I hate it. When we have tried to shift things a little, Loxxley has done better and I had to push for that---remember this if you are ever a NICU momma. Your mothers instincts are usually correct!

One last thing. As I said in my last post, "It can ALWAYS be worse."  I just talked with a mother in the NICU as I often do. I am quite social-or maybe just nosy.  She sat and told me her story, I am not going to share it, but my goodness. Poor thing. My heart just broke for the major trials in her life. We both left each other agreeing that we are holding onto HOPE, when nothing else is left.

Hold on......


and ps. many of you want to know what you can do for me....your doing it by your comments and undying love!

Anxious

I drive to the NICU daily and almost always am by myself. Since the passing on of Ollie, I get anxious every time I am alone. If I am in the car alone, the bathroom, the shower or sleeping alone, I get an anxious feeling, as if I'm forgetting to do something very important. I have never really experienced this kind of CONSTANT anxiety. It never really leaves, it just lessens at times, but worsens when I am physically all alone.

I DONT LIKE THIS. 

On the drive up to the hospital today, I started thinking of the time I rode in the ambulance up this same beautiful hill with Ollie. Today, I didn't mind the drive. It was sunny and blue skies all around. I was thinking about my little miracle sitting in that isoltte at the top of the hill. 

I have a MIRACLE. 

The miracle we prayed and wanted so badly with Ollie is now playing for our second son, Loxxley. We prayed just as hard for little Loxxley to be healed and made whole, and he is. He is growing. It seems so slow to me as I sit and watch the clock ticking by in between my stares at my little peanut. But the days are passing and Loxxley is getting stronger everyday, as am I! I feel like not much could stop me or tare me down anymore-not too sure this is a good thing because I'm a little callused. Momma bear has been unleashed. Watch out. 

•Loxxley currently is needing more oxygen. Yesterday they trialed him off his cpap, he failed. Little guys lungs still need help. He's strong. He's fighting and I am here by his side. Sure love that little peanut. 

•His feeds are at 34ml and fortified with 4ml of human milk fortifier-helping him gain weight I guess. 

•He weighs 1710 grams 3lbs. 11.2oz.

•He is getting a follow up brain scan this evening. 

•Still kangaroo holding him daily for about 3-4 hours. 

•Loxxley is now 6 weeks old and 34 weeks corrected age.

•He is still on caffeine to help his lungs work better and a diuretic to drain the fluid on his lungs and the rest of his body. 

So I guess we continue to fight this battle we call LIFE. And as I fight, I try to see the beauty and there is so much. 

LOOK FOR THE BEAUTY 

Photo credit http://xaxor.com/photography/30743-beautiful-landscapes-a-nature-in-hdr-photos.html

I heard a great little saying today as I was listening to a talk by Jeffrey Holland-a wise and gentle leader of the LDS church.  He said, "If the bitter cup does not pass, DRINK IT."  Whoa, am I drinking it. It is full and oh so heavy to digest. 

Here is the link of the talk. He speaks about depression and the dark moments. I found some very insightful words to help me in my grief. 

http://www.lds.org/general-conference/2013/10/like-a-broken-vessel?lang=eng#watch=video

Love you all and once again thank you, thank you, thank you for your prayers and encouragement. 

Tired

I am tired...again. This time I'm even more tired than before because I'm still running my emotional marathon of grief and now piled on to that is the emotional roller coaster of the NICU. Goodness sake. No time for myself. I don't mind, but how long can I do this? I guess at least with the NICU there is an end in site, with missing Ollie, it's life long and it's a physical pain.

My word, this NICU job is full time. I get up in the mornings, shower-sometimes-I know I'm awesome, make breakfast, clean up, pump, then race off to the hospital. Stay at the hospital until 7ish, pumping and holding my little man (I am holding him as I write this) while I admire his perfect features and furry body!!! Then drive a half an hour to arrive home just in time for my meal made by my special chef! Yum. I then relax for an hour and change into my pjs and fall asleep on the couch, exhausted. Where does the time go? The days go by so quickly. At least with the days passing so quickly, it takes me closer to holding Ollie-as I write this I still can't believe, accept, grasp, or understand that he isn't physically in our home to take care of. It's too much to bare. 

Loxxley is well on his way to 34 weeks-6 weeks old. It's so weird with this gestation age thing because he should stil be in my tummy. 

Poor little thing has all that 'stuff' on him. I can't wait to hold and snuggle him with out the cpap. He also has a football shaped head from the pressure of the hat. 

Today's stats

5 weeks 3 days old (33 weeks)

HR(heartrate):159

RR(respitory rate): 37

Oxygen: 94

Feedings: 30 ml

Cpap of 4: 23% 

3lbs. 9oz. 

One of the firsts times he has been wide awake while I'm there. 

oh my word

Loxxley still needs your prayers........

Today I arrived at the hospital at 12:15. I usually am there at 12:00 for the c-pap care, diaper change and feeding.. Today I was a little late and the nurse had already fed him. When I arrived he was spitting up all over and it was coming out of his nose and mouth. No one had noticed it. So, I told the nurse. She came over and started to suction him out. Then, he began to turn blue. He wasn't moving. My heart sunk. Oh man I totally know this feeling all.too.well. Are you kidding me? What do I need to learn from all of these experiences? Please God, enough already. My heart almost exploded from panic as I rubbed his tiny precious foot and nudge him to breathe. The nurse and RT kept suctioning him and then giving him more oxygen. Finally he did take a couple of breaths on his own, but not enough. The nurse had someone run and get the doc. She came in and looked pretty concerned with what she saw. Loxxley's heart rate was at 50 (normally about 150-160) and staying there and his oxygen was at about 30% (normally between 87-98). He then turned a pale color. Still no breaths. He wasn't even moving. I was more than nervous. They turned up the oxygen to 100% and still, he was not responding. They then gave him some breaths after his airway was clear and suctioned his nose and mouth again. Finally, he worked everything out after about 3 minutes....it seemed like 5,000. He had to recover for quite a while. Poor little guy. He is now fine for the present moment.

He also had his ROP eye exam this morning. Its very invasive and of course he hated it, but they said he tolerated it very well. His eyes were all red and puffy after the procedure. This is what Stevie Wonder has. Loxxley's vessels appear to be growing appropriately. They will do another eye exam in 2 weeks. 

He also had a chest x-ray this morning, due to not being off oxygen after a month since birth. He has had increased oxygen needs in the last week. He is now at about 30%, which is still a minimal amount. He has fluid on his lungs. They call this, chronic lung disease. They are giving him until Friday to see if it works itself out, if not, they will give him a diuretic to help with the release of fluid.

**Not too sure why they did all this to him today. Poor little dude is so fragile and so tiny. He hates being messed with and every time he eats or poops his oxygen goes down. He still needs LOTS of prayers please.

On the way home after tucking Loxxley in, I began to break down. I let it all out. I often find myself holding it together. There are just certain times when you have to be tough and today was one of those. So, when I was alone, I cried and I yelled and I was super MAD. I asked WHY? I screamed some more. and I even yelled every Christmas song as loud as I could and I was still MAD.

Well, here's to a Merry Christmas....... Love you all.

Loxxley Hebb
Weight: 3 lbs. 2.1 oz.
 Feeding: 27 ML
Oxygen needs: 27-30%

Poppy at the Children's Museum

.our next little cashier.

.and our next little vet.

Little Loxxley!!!

Doernbecher neonatal intensive care unit

•Our little guy is doing well and growing about 10grams a day! 

•He is tolerating 20ml of breast milk. 

•He is pooping and peeing. 

•He is on cpap to force room air (21%) into his lungs to help the alveoli not collapse. 

•At times, through out the day he does need a bit of help with oxygen, but majority of times he is on just room air. 

•He still has a feeding tube which will hopefully be removed in 2-3 weeks and I can begin nursing him!!! 

•I have a cold sore which I have now had for a week, so I'm not allowed in the NICU.
Oh my goodness.
Darn it's hard to not see my little peanut.
The herpes virus can kill a preemie with in hours. Not worth even getting near him or any other preemies. 

•Chris has done the kangaroo hold all week!! They both LOVE it. Loxxley even opened his eyes for a while and turned to Chris when he heard his voice...tender. 

•Chris and I have both changed his tiny diaper and given him a taste of breast milk to coat his dry lips and mouth.

**We are so touched at the kind things done for us. I say this all the time, but it's true, we can never repay you all, but we will continue to pay it forward. 

Thank you 

Thank you

Thank you

for all the faith in me, my baby and my family. I am weak, so weak, but you all make me strong. You lift me, you inspire me, you hold me up, and you pray for me. It means the world to Chris and I and we couldn't survive without all the genuine love.

With that said, I could still just cry every minute. My heart hurts, it aches and it's broken. My breathing is shallow and I find myself constantly taking a deep breath because I forget to breathe. Tears pouring down my face are always just a thought away-but I am real good at pushing those away lately. When it's all too much, I just don't think.

I can't go there. I just can't. 

I am numb. 

Surviving. 

Living in disbelief. 

Dreaming of better days....

Our little fighter

Many people have been texting, calling and emailing me about an update....I' am so sorry.
I have been busier than I thought with my new little guy, learning to walk again, and enjoying my husband and little gal!!!

10 days old

My days have been spent pumping every 3 hours, getting my body use to walking again
and driving to the hospital.
I wish I could stay with my little man all.day.long, but I know I have
another child who needs me just as much or more at this point.

***

The little guys pod and home for the next few months

Look at that tiny bum...oh my, I was so nervous.

First time holding him, only for about 5 seconds while the nurses changed the bedding, but it was special.

I sang to him and he looked at his momma!!

Now thats just the tiniest foot...teenie tiny.

No, this little peanut still doesn't have a name.
There are about 3 names we are considering, well I don't really love them, but they are all we've got.
EZRA
LOXXLEY
KOA

My favorite is Loxxley, nic name Loxx.
Let me hear what you all think, and remember his middle name is KAI, after his big brother!

Sweet baby boys update
-He is still on room air and cpap-
-He is now having regular stools-
-He is tolerating his cpap changes very well, he is on 4-the lowest-
-His tummy is now soft-
-His x-ray of his tummy came back normal-
-He weighs 1000 grams-
-He is on 6ML of breast milk-
-He lost blood and they aren't sure where it went, so he had a blood transfusion, he accepted it well-
-Not sure about the brain bleed after the blood loss-
-He has another brain scan on Friday-

Please pray for our little guy.
 I really feel bad to ask for help and prayers again. I already had prayers and help when Ollie passed onto heaven,
now this???
It's just too much for Chris and I.
We are stuggling.
How can we possibly be doing this?
Its just sureal to sit in the Doernbecher Neonatal Critical Care
and
think about when Ollie was in the
Doernbecher Pediatric Critical Care.
How can we possibly have 2 sons fighting for their lives in the exact same hospital?
We didn't get our miracle we had wished, hoped, pleaded, and weeped for.....I hope the second time around we get our MIRACLE.