Showing posts with label NICU. Show all posts
Showing posts with label NICU. Show all posts

Monday, June 29, 2015

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.

<<<<<

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.


<<<<<




  


Tuesday, November 25, 2014

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!!!















Sunday, October 12, 2014

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. 



Wednesday, May 7, 2014

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!

Monday, March 3, 2014

Oh, by the way, we are home!!

I haven't wanted to write on my blog, (actually I haven't had a free second) becasue I have too much to talk about. Well, here it goes, my randomness of thoughts and feelings as I try to fill you all in on the last 2 weeks.....


Loxxley was released 2 weeks ago and his 85 day NICU stay is officially over.
Yippee!

.late night snuggles.

-couldn't be more relieved, but also scared at the same time to take home a fragile preemie who needs special care-
We (and I say we because I felt like I was also held captive to the NICU), got released at 3:00pm on Sunday. The only thing I was sad about was leaving all of Loxxleys nurses who had become great friends to me, who I entrusted with my most precious baby boy, and had formed special bonds with. Caren, Belinda, Maureen, and Nicole were his primary nurses and my favorite ones!!! They always took such excellent tender care of Loxxley-and me, of course!
We will miss them all- and also all the other wonderful food service people, front desk people, and labor nurses!!! They have all left a solid imprint in our lives.

After the car was loaded-or rather jammed from top to bottom, I drove straight to the airport, picked up Chris and we were Utah bound. We were not looking forward to the 15+ hour drive due to a stop every 2-3 hours, and each stop requiring an hour break because little Loxx was a slow eater-and he choked occasionally, so I didn't want to rush him. We made our first stop after 3 hours, I was feeding him like normal-upright and kind of to the side so the milk would pool in his cheek not his throat. He all of the sudden began choking, then he stopped choking and held his breath, he turned blue of course and I began to pat him vigorously while yelling to Chris to do something. Loxxley didn't take a breath for about 20 eternal seconds. I pretty much lost it, I knew how real it was to have a child stop breathing and pass away right before my eyes. I felt like cursing the almighty. I wanted to give up then and there, run away from the car and never come back, then reality set in. 
I had to keep fighting, fighting until the bitter end, just as Loxxley was. 
He finally worked it out and started breathing again. It took several minutes for him to collect himself. From seeing him do this several times before at the hospital hooked up to the monitors, I bet  his heart rate went down to 80 and his oxygen to about 50...scary.  He was fine the rest of the way home-I was not. I couldn't stop shaking and had so much anxiety, I thought I might have to call life-light to transport him home because I wasn't capable of feeding him. We arrived at the hotel after driving about 6 hours. I was a mess the entire night and next morning.
I was horrified. 
I felt as if my body was shutting down. 
The next morning I was still shaking while feeding the baby and had this idea to demand my other son to be present with me and to assist Loxxley while swallowing his food without choking. I asked Ollie to give me strength to physically feed the baby and at that exact moment, I was no longer scared and I stopped shaking immediately. 
I knew I could do what I had to do with Ollie by my side!!!
After 15 grueling hours of driving and staring intently to make sure Loxx was breathing, we made it home.
I walked into my parents basement apartment-yes we moved back in with the parents to catch our breath, and the peace I felt was overwhelming. The colors of my kitchen chairs, the beautiful plants, the familiarity of my "stuff" was all so wonderful.
<<<FYI: My milk the next day was complete clear water, ultra skim milk-whoa stress does a number to you physically>>>

.getting his EKG.


So, the last 2 weeks have been very intense. Loxxley is a preemie and with that he requires special attention while feeding him the bottle. He is not super efficient at sucking, breathing and swallowing. It takes a lot of coordination on his part and I have to aggressively watch him for cues of choking. It's not a relaxed event like breastfeeding. He is slowly breastfeeding more and more and never chokes while doing it-so I prefer this, but as I mentioned my milk turned to water and I lost most of it after the choking incident. 
The following morning after we got home my parents and Poppy got sick, so this meant no Poppy near the baby or Chris and I. She had to stay upstairs, this was pure torture. Remember, I haven't seen her for 5 weeks and before that I was on bed rest since October....poor girl just wanted her momma to hold her and her momma just needed her too-I was crumbling in Portland all alone without Ollie, Poppy and Chris. And now 2 weeks later Poppy has had a cough, got rid of it, got diarrhea and barfed, and now has a bad croupy cough again-torture, but yes, it could always be worse. 

Just trusting and praying that Loxxley doesn't get sick, we have taken every precaution we possibly can besides living on top of a tree in the sky all alone. :-)

Thank you my sweet family, friends and cyber friends for all your comments of encouragement. It pulled me through the last 4 months of this short life. I love and need you more than you know.


.someone loves her brother.


 
 /*/*/*/

Thursday, February 13, 2014

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!






Wednesday, January 15, 2014

Change

Just a few small things....
(Not really time to explain everything in depth-due to my lack of sleep, moving and my anxiety of leaving my child in the NICU for 7 weeks now)

A new job for Chris!
 He will be working for Doppelmayr as an engineer. A dream job for him. Got the job and moved out of our house within 2 weeks. This change will be a nice way to take a breath, collect ourselves and just slow down for a bit. 


A big move to Utah. 
Chris, Poppy and my awesome dad drove all night and then unloaded the moving truck today. We will be living in my hospitable parents basement appt.
We will miss Oregon. We have loved living here and eating at so many yummy and unique restaurants. We have so many friends who will forever be our friends and who we will deeply miss. Its so bittersweet to leave our neighbors who helped perform CPR on sweet Ollie. This house was the last place Ollie was...everyone knows Ollie there.
 Our Oregon 4th street and amazing ward will always hold a tender spot in our hearts-I have gotten so mushy with my words and more serious about life since Ollies passing-I will never be the same again.



Living at the Ronald McDonald house. 
I will be staying here until Loxxley is out of the hospital.  
Whoa
What an amazing place this is for families and what a blessing to be experiencing what so many have donated to. They take care of everything and provide taxis to and from the hospital at all hours of the day or night. 
A Big Gigantic thank you to everyone who donates to this great cause. 
Truly amazing in every way.
We hope to give back in a small way someday.


*****

A few pics of sweet Loxxley.
Because he's just so darn cute and precious in every way.
4lbs 11 oz. 7 weeks old. 
35 weeks corrected.
Has an NG feeding tube and is on diuretics.
He is still desating with every feed.
-in every pic he looks so different-







Sunday, January 5, 2014

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. 


Tuesday, December 31, 2013

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. 



Monday, December 23, 2013

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.

Sunday, December 15, 2013

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....

Saturday, December 7, 2013

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.

Sunday, November 24, 2013

Baby Boy is here!!!

 Labor and Delivery 
28 weeks gestation
November 24, 2013



A quick update:
Baby boy Hebb has arrived. 
I had contractions the entire day and night before and was still bleeding, so the doctors started me on magnesium. The contractions lessened and I was taken off the mag. Then the next day the contractions started around 5pm. They were painful, but nothing too serious, until I had about 4 contractions that were so severe I started crying and weeping with agony. I could tell his bum was sitting on my cervix and with each contractions the little guys heart rate dropped to 50...
I was really worried. 
All the doctors ran in and I started telling them the baby was coming out. The pressure was intense and I was trying to hold him in until they were ready.
They rushed me to the OR and were preparing for a c-section. I had planned for this event many times in my head-I played it out with many doctors and now that it was actually unfolding, I was not scared. 
I trusted the docs. and I trusted God. 
The doctors brought in the anesthesiologist and everyone was prepared, they quickly checked me again and the babies bum was coming out. 
They said to push, I was confused and said, "where" because I was planning on the dreaded c-section. 
I then realized I was just going to push him out.
I gave one push and they said, "Harder" then I gave it my all and he popped right out. They then yelled, "it's a BOY". 
And wisked his tiny body off to the place they had warned me about. The place of resuscitation and assessment, where they also give and an apgar score.
Tears of happiness and sorrow began to roll down my face and I began to cry. 
All I could think about was Ollie.
I missed Ollie
I missed my sweet precious boy, the one I knew and already loved.

I then delivered  my placenta and all the doctors were interested to see where the abruption had taken place, and we all looked carefully.
I told them I was keeping my placenta to dehydrate and make into capsules-yea you might think this is weird, but it is so smart and so nutritional for baby and I-every animal does this.

I was then wheeled back to my room. 
Chris and my parents quickly arrived and we all went to meet this little guy. 

Baby Hebb
Born: @ 7:25pm
Weight: 1005 grams -I think 2.5lbs 
Apgar: 1 minute-6 
           5 minutes-9
*He was on a about 25% oxygen for about an hour and then quickly down to room air. 
*He is now only on room air and a cpap.
*The doctors are amazed at how well he is doing and that he is also a male-females fight harder and are more mature.
 *I have already pumped 8 times and have given him about 6 drops of colostrum, that's huge for him, It instantly settles him down.
*He has giant feet and hands like his daddy!!!
We haven't really got a great look at his tiny face yet.

The neonatal doctors were short staffed and said they couldn't have had a better baby for this type of  situation.
Several different nurses have all expressed how feisty and tough he is. 
He will keep fighting.
 I just know it.
His brother angel Ollie is guarding him with all his power and I also think he has given his fighting ability to this baby, and maybe even his strong heart!!!

**We have been warned several times that the NICU is a roller coaster ride. 
Well, that's nothing new to us. We are professional riders!
So, Chris and our families continue on this ride, and we are holding on tight. We still need lots of prayers, as does this little champion. It has already been a miracle that he is doing so well with his lung development. We wont know much more until after 72 hours-they try not to disturb the baby too much during this time to prevent brain bleeds.
I am so nervous and anxious about the outcome.
I am living in the moment.
Today the baby is well and pushing forward.
I trust God and his help.

***Thank you for the love and prayers*** 
and thank you mom and dad for all your help