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!!!

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. 

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.

A better day

27.4 weeks

Oooh yea!

Today I had no visitors and no phone calls, it was ok though. I just relaxed and was in the moment...ok, I did look on Pinterest a lot and dreamt about fun things!!! 
We like our uneventful days to pass by. 
This picture was taken last week...

I'm awesome and I know it! I was so exhausted after taking a shower, I just plopped on the bed and couldn't move. It makes me laugh to see this!!! 

So much encouragement and sweet words were sent my way....and I thank each one of you! We really need help through this. It's not an easy thing, but we are making it! All of the suggestions on getting through the hard days sure helped me...basically I just need to keep on keepin on! That's been my saying for many years now. And it's still true. Just keep being, breathing and hoping. 

Status update

*peanut is stable and looks good 

*amniotic fluid level is back down to .8cm. darn. 

*i feel really good and strong

*the doctors and nurses are wonderful

*i showered all by myself today and lotioned my entire body

*still being monitored all day, and still on the labor and delivery floor

*i sleep well and until about 8am

*i only have one IV, my biggest complaint has been my annoying IV's

***One tip I have for others going through this in the future, is to turn your care over to the doctors. Don't sit and worry because there is little you can do. It's out of your control. God is in control. I pray the doctors are lead by God and their knowledge will stear them in the right direction when the time comes. I physically gave my worries to God and the doctors. It's a lot easier this way. 

Do it. 

             

             *^*^*^*^*^*^*^*^*^*^*^

                    

        [little miss muffin]

This picture makes me happy...she was watching baby Einstein, she loved it! 

•••27 weeks•••

Sunday November 17, 2013

OHSU

A quick update:

Yesterday the doctors talked as if we might meet our baby and to prepare for a possible delivery.  I have been bleeding more and more.  I guess when a woman bleeds this much after her membranes are completely ruptured, she will shortly go into labor. Well, not in my case this is my third big bleed. I just keep bleeding. They keep checking my clotting factor and blood levels and they have been normal! The baby appears to be fine through all of this and continues to grow!!!  So proud of this little babe. So, they have continue to watch me and peanut closely. There is a fine line to walk for the docs, of course they want to keep the baby in my tummy as long as possible, but they also don't want to wait until my placenta pulls away completely from the uterus and cuts off the babies oxygen and nutrient supply. Then things would get scary.... We still don't know when the baby or my body will decide to make known what's going to happen, but I know the time will present itself. Until then, waiting and praying. 

The neonatologists came in to talk to Chris and I today and give us the current survival statistics. It just so happened to be the same guy who spoke with us the very first night of our arrival. The odds seemed pretty horrible then and now as we talked with him, the odds were very reassuring and hopeful. We wanted to be

informed on what we could now expect since we have made it to 27 weeks. He basically said there is no graff because the chance of survival is so high, like 95%, of course the morbitiy rate is still present, but significantly decreases. He was very hopeful that they have many amazing doctors and with their knowledge and equipment they can help this baby make it through the first few months of life. We are so happy. Yes, it will be a long journey, but a hopeful one.  When the baby arrives we can plan on it being in NICU until it's due date, Februrary 15th. 

Our date tonight....

We Snuggled and ate yummy food from the famous, Lardos. When Chris went to pick up the food, the lady at the restraunt gave Chris 2 cookies, homemade chips, quinoa salad and 2 delicious sandwiches for $13.00. She felt bad I was in the hospital....so nice!

Forward on to 28 weeks!!!!

Doernbecher Memorial Service

My mom and I drove up to the Doernbecher Children's Hospital for a memorial, honoring all the children who died between March 2012- March 2013.

As we made the drive up the long and windy road, filled with beautiful blossoming trees, the sun brightly shinning, we both began to cry.  Our emotions took us back to our personal experiences of the nightmare coming true before our eyes.

I cried out loud to my mom, "I never could have imagined those intense feeling of pain and fear as I road in the front seat of the ambulance, watching my baby Ollie in the back fight to stay on earth. We really had a "worst nightmare" come true, I really found Ollie dead in a washing machine, Ollie really fought for his life on my living room floor while EMT performed CPR, I really called Chris and said 'Ollie is dead', Chris really called all of his family to bear the bad news and listen as their hearts broke, we held and kissed Ollie while he transitioned from this life, we donated his body parts, we planned a funeral, we wrote his obituary, we went to the funeral home to see if he 'looked' good- looked good dead? are you kidding me? how awful. of course he looked dead. pale. nothing. gone no spirit. dead. dead. dead. we had all the men build him a beautiful casket, we really buried his 36 inch body in the ground."

I had to say all of this out loud. It hurt. It hurts writing it and reading it now. I never thought my life would be as it is now. never.ever. but it is my life.....   

This is Cameron Merrill. 

Read his story here 

I met his sweet momma as we cried, hugged and felt and instant connection. I just know Cameron is sweet too, look at that precious face. 

He is Ollies buddy in heaven, I am sure. 

He had Leukemia. He fought a long hard battle. 

His momma wanted him to be remembered as a silly, smiley, water playing, puddle jumping, bubble blowing, balloon loving and popcorn munching kid.

The memorial was such a nice tribute from the hospital honoring our precious children. The parents could put up a collage to show precious memories of their child. It was nice to see all the other children who died and feel as if you knew them just a little. All of the parents hearts were broken. It was so sad and tender in that room. Some of the children fought long hard battles with illness, and some died suddenly like Ollie.