Daddy singing to little man

Bye Bye NICU - Hello Home

No more NICU, no more stickers. I wore my sticker with pride. Everyday on our way up to the 3rd floor where our little man was laying waiting for us we had to stop and get our sticker saying our names and who we were going to see. I always put my sticker on with pride. Pride that my little man was so strong, up on the 3rd floor in NICU getting better and better every day. When we took breaks or we left the hospital I left my sticker on - it was my connection to him. We saved every single sticker. Someday they will make it into a scapbook.

Jayven is home with us, growing and strong. He left the hospital at 4 pounds 12 ounces. We are so very, very happy to have him with us and be able to spend every minute with him. The hardest part of him being home is who gets to hold him. We are all trying to "scoop" him away from each other. Skylee is the worst, if I wasn't such a control freak and need him next to me constantly she would have him 24/7. She is such a great big sister, I couldn't ask for a better helper than her (now if I could just give up some control - baby steps). Dustin comes in every morning and says "hi" to him (even before he says it to me, LOL), he's very protective already. I love that my kids love there brother with open hearts.

I just love that little man!

I haven't posted any updates in a few days because I have been with my little guy. He is starting to bottle feed and any NICU mommy knows the drill. You live in 3 hour increments and you cross your fingers and toes that your little one is awake and takes their whole bottle. So far so good (sort of).
When I am there he seems to do VERY well, he takes his entire bottle with NO issues and is happy as can be. If I am NOT there I am told he was sleeping (you do not wake a preemie baby to bottle feed if they are not 100% bottle feeding, Jayven is not yet). This has been going on for the last few days. So my goal is to be there for every feeding so we can see if and when he is too tired to try the bottle.
He really is growing so fast, his face is full and even chunky, cute little thing if I do say so myself.
I will leave off with a few new pics

Monkey pics - nothing new to report

Not much going on here, these days. We are slowly and steadily bottle feeding (this takes time for NICU babies, and LOTS of patients on our part).
While we patiently wait, we are always happy when certain nurses and techs are on and one of our VERY favorite techs brought these cute clothes and blanket in for Jayven over the weekend (thank you Jessica).
The huge smile on Vic's face is because he has learned that if he does not want to beg me to hold the baby (YES I AM A BABY HOG) then he needs to scoop him up while I am setting my pocketbook down. And scoop him up he did! Hes so good with him. I am a little bit of a control freak (ya ya whatever) so when Vic started wanting to pick him up and put him in his bed all by himself I was loosing my mind. I had no need to worry, hes amazing with little man.

He is SO perfect!

4 pounds!!!!!

It's official, Jayven Lee Johnson is now 4 pounds! The last step is to be feeding 100% from the bottle and we are good to go. A few more weeks and our baby just might be coming home with us.
Daddy's happy smile!

Dustin holding Jayven and Skylee (she still cant get enough of him).

6/14/2012 (first picture at his 4 pound goal) - his face is really filling in.

Bottle & voice BIG DAY!!

Today was a BIG day. When a baby is in NICU they have tasks they must "master" before they can go home. Gain weight gain, breath on their own, regulate their body temperature with no assistance & the most difficult, feed from a bottle. (among other things.
Jayven has moved through most of his tasks with ease and little to no complications. Today he started the most difficult (for some babies) of all.
He started to bottle feed. I had been prepped for all kinds of issues and complications so I was worried BUT I was ready.
The nurse gave me a few little tips about feeding a preemie and what to do and not do. Jayven took to feeding with a bottle with NO issues. For now he is only bottle feeding 2 times a day and both times he was a champ!! He took in very little as expected but with time he will work his way completely off the feeding tube.
(Please ignore my hot mess hair, time and $$ do not permit for mommy "touch-ups" these days)

Another NICU learning curve is not hearing your baby cry. Jayven never cries. He will be 1 month old this Sunday and today is the first time we heard him cry. He found his voice and I just love that little cry.
Seems like an odd thing to ask for, right? Not many parents WANT their baby to cry but this was a sound we welcomed and even took a video of because it made us so happy to hear. I am told over and over to enjoy the silence while we can but I don't think his cry will ever get old for me.

So we had 2 HUGE mile stones today and we are so close to 1 more - Jayven is only 1/2 an ounce away from being 4 pounds!
I bet he will hit that one by tomorrow night.

3 weeks old

Today Jayven is 3 weeks old. This has been the fastest and still the slowest 3 weeks I have experienced. Everyday WE go visit him and WE tell him how much WE love him and that WE want him home.
Skylee reminds me that he has no idea what "home" is and that makes me sad.
I asked the nurses if there has ever been any studies showing NICU babies do not bond as well later in life with their mother (parents/families) because of the lack of contact in their first few days/months.
The answer was no, but they looked at me a little strange like it was a weird question to ask. After a short pause the nurse went on to say "you do know you are great parents? Right?" I admitted that I felt huge amounts of guilt that I do not sit in NICU 24/7, that I feel like a horrible parent because I need to sleep, eat and take breaks. She said to stop feeling this way, she told us how we are their more than most parents and we would be shocked at how many of the babies their do not ever have a single person come spend time with them, hold them or tell them how much they are loved.
She said she sees me kangaroo Jayven and pointed out how good that is for him. All of this should have helped me feel better and maybe it did a little, however, I know deep down I am still not their enough for him or my other kids. If you asked Dustin he would say "I never see my mother anymore".

My rock:
One of the reasons I have not completely broken down yet is because of Vic. He loves me & little man so much, he is right there with me every visit. He does not take breaks or stay home. He keeps me calm when I want to scream. He is patient with me when he REALLY wants to hold Jayven but I just cant bear to hand him over just yet. He talks to him and makes little man smile. Vic is my rock and for that I am thankful. Happy early fathers day Victor Lee Johnson, I love you!

Sock monkey, big sister & shirt #2!!

It has been 3 weeks since Jayven has been with us and I want to kick myself in the ass for not taking 10 minutes to stop at a store and buy a stuffed animal to use for pictures to show his growth progress.
Thankfully Jayven's "roommate" was kind enough to give him a going away gift today as she was heading home with her mommy and daddy. (thank you Heather, we hope you thrive at home and we cant wait to see you at the reunion) Here is little man next to his new sock monkey wearing his and new shirt
weighing in at 3 pounds 8 ounces

And the biggest news today was that Skylee FINALLY got to hold Jayven for the first time!! This was huge, we have been asking for a little over a week and no one would budge "the rules are the rules. PERIOD." - today our nurse (what an amazing girl, hope she is around a lot) allowed her to hold him. Sky was very happy and so was Jayven, he loves her voice and she (and daddy) can always make him smile.

Big boy bed and first shirt

Our little man is making all kinds of big moves!
He got to wear his very first shirt today! May sound like a little thing but it's such a big deal to us.
He is swimming in it but shhh .... don't tell him, we told him he is rockin it (and I truly believe he is) ;)
He also made it out of the incubator into a "big boy" bed. This means he is regulating his temperature on his own. So far so good little man.

I know most of you have seen on Facebook that he is now at .... drum roll please
3 pounds 6 ounces
again another big move for little man. Keep going Jayven, you got this and we are all rooting you on. Love you so much!!

Empty

Laying in bed last night I could not sleep and I just had the most empty sad feeling inside me. I feel ripped off that I didn't get to be pregnancy for 9 months and feel all of the joy and pains of full term pregnancy for the last time in my life.
I felt empty that my baby was no longer in my stomach as he should be and to top it off he is not here, at home with us.
It's not fair to him or any baby to learn that being hooked up to monitors, stuck with needles and cared for by multiple strangers daily is the norm. Babies should be loved and cared for by their MOMMY & DADDY - this feeling sucks for me and I just hope it does not feel the same for him every time I have to leave him.
You know what also sucks? The feeling of seeing pregnant woman, it's weird how just the site of a woman who is clearly just about ready to give birth (i.e going to have a term baby) can trigger me to start crying on cue. Never mind how mad I get when people complain about pregnancy related stuff, just makes me want to ask them if they understand how lucky they are!!
I think this stuff bothers me more because as I said, I know this was the last time I will have ever felt the kick of a baby inside me again.
I know I have a long time before Jayven comes home so this empty feeling is something I have to deal with or learn how to cope with but I don't see it getting easier.
For now I will just spend as much time as I can with him here in the hospital and hope he does not feel the way I do when I walk away from his incubator.

No news is good news - right?

Things are pretty much the same (a good thing).
Jayven is holding steady without the help of air. Right now all he needs is the incubator (he still cant regulate his own temp), a feeding tube (they don't start trying to teach him to suck a nipple for another 2 weeks) and he is still monitored for the basics.
All-in-all he really is doing exactly what we want to see.
None of us can seem to get enough of him. I am getting a little more comfortable doing things that normally come natural to a mother. When your baby is only 3 pounds things like changing his diaper (while in an incubator through to arm holes), moving him or placing him back in the incubator fearing you are going to break him or pull out a tube are things you can't help but to worry over. I am getting there, one-day-at-a-time.
Not a new picture but still one of my fav's, love my kiddos!

3 pounds - he did it!!!!

OMG!! Jayven made it to 3 pounds tonight!!
Just one more pound to go and goal #1 is complete.
My little man is doing it just like he is supposed to.

1 more oz please - a few new pics

Jayven is 1 oz away from 3 pounds!!
Might not sound like a big deal bit trust me it IS!!!
Just a couple pictures today as we head of to Ronald McDonald house for the weekend to be closer to little man.

A Poem I had to share

If you know me you know I am in NO WAY a religious person, I would say spiritual and I believe everything happens for a reason, but this poem touched me, made me want to cry and maybe even gave me a new way to see things.

How Preemie Moms Are Chosen
by Erma Bombeck
Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

“Armstrong, Beth, son. Patron Saint…give her Gerard. He’s used to profanity.”

Finally, he passes a name to an angel and smiles. “Give her a preemie.”

The angel is curious. “Why this one God? She’s so happy.” “Exactly,” smiles God. “Could I give a premature baby a mother who knows no laughter? That would be cruel.”

“But does she have the patience?” asks the angel.

“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair.

Once the shock and resentment wear off, she’ll handle it.

I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I am going to give her has a world of it’s own. She has to make it live in her world, and that’s not going to be easy.”

God smiles. “This one is perfect. She has just the right amount of selfishness. “

The angel gasps, “Selfishness! Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect.

She doesn’t know it yet, but she is to be envied.

She will never take for granted a spoken word. She will never consider a step ordinary.

When her child says “momma” for the first time, she will be witness to a miracle and know it.

I will permit her to see clear the things that I see – ignorance, cruelty, prejudice – and allow her to rise above them.

She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“But what about her Patron Saint?” asks the angel, his pen poised in the air. God smiles.

“A mirror will suffice.”

Balance = Not easy

So finding a balance between being at the hospital with Jayven and being home with my family, cooking dinner, doing laundry, cleaning the house or even RESTING has proven to be something I SUCK at!!
I have great intentions of a cooked meal, I even know what I want to make but before I know it I am heading back to the hospital and I get home too late to start the well intended meal. I have visions of clean laundry hanging in our closet and the floors being shiny and clean ....... reality, is I am hunting for clean pants and the floor needs a good scrub.
It's very hard to not feel guilt when you can't be everywhere for everyone.

Any advice on how to time mange would be helpful and I am open to hearing what you got

Jayven is doing well - he's off the breathing machine, he is still on the feeding tube, he's not gained any weight yet, he has "dips" in his breathing about 1 time daily. He loves to hear our voices. He smiles when Daddy or Skylee talk to him. He amazes the nurses with how much he moves around and lifts his little head from one side to the other. As you can see he is wide eyed (when he wants to be). So we wait, we wait for his weigh gain and him being able to eat on his own with fingers crossed that he continues to be our strong little man.

Happy Birthday to ME!

I keep telling myself Jayven is a gift and because today is my birthday I choose to think he didn't want to miss all the excitement!**Insert WICKED sarcasm

Truth is I turned 40 today and I don't have a house full of those horrid over the hill balloons or even a cake for that matter - im really not sure anyone gives a flying rat's ass that it is my birthday. O-well, life goes on and then you turn another year older in 365 more days WOOP-WOOP!!

Anyways back to my point, he is my gift - my happy little, hardly ever cries, sweet, gift. He is doing fantastic, yes still in NICU but come on give the little guy a break, hes only 2 pounds. Even so, he is breathing on his own, has no IV's and is the strongest 2 pound human you will ever meet.
My goal today is to enjoy the ones I love, not find any grey hairs and not let people stress me out (although they have tried very hard already!)

Lets talk about bilirubin & Nasal cannula's? What?

So I am learning real fast that NICU is not only a place but it is a language all its own. Today when I walked in and saw Jayven back under the blue lights I was told all about bilirubins and all I could think was:

"I never thought I would have any reason to know what this word means"

However, now I do know and it's just one more thing I can say I have stored in my bank of knowledge.

The great news was Jayven had no nasal cannula (another new word for me). You know what it is, you just probable didnt know what it was called, this thing:
Look how darn cute he is without all the distractions of nasal cannula and IV's (aka "breathy air thing" before I knew any better) - now he has plenty of room to kiss his little face all over. Something Skylee could not stop doing, hes addicting :)
We found out today that Jayven is just as ready to come home as we are to get him home. If he is not wrapped in his blanket he tries to escape the incubator. Twice he has made his way all the way to the glass. His nurse told us today that if he was able to be put in a play pen, she is 100% sure he would be scooting all over it. She called him a wild man, lol. I find this pretty impressive for a 2 pound, 7 day old little man.

It's been a week?

Today Jayven is 1 week old

How we got here:

On May 19th 2013 my life, as I knew it, changed again. It was just a normal day. (Really? Is anything ever normal in my life?) It was May 16th I was 30 weeks pregnant and I had a 10:15 appointment for a routine monthly check up to see how baby was coming along.

Little did I know EVERYTHING in my “very well planned out, I have everything under control” (it’s just a facade, trust me) world would be tipped sideways (sideways is better than upside-down, it means we haven’t completely spilled out yet) in just a few hours after I left my house. I got to my Dr., I signed in, I sat in the chair, I raised my arm for the blood pressure cuff (all pretty normal right?). The nurse took off the cuff and said “I am going to take it again with a different cuff” – ok. The Dr. came in, didn’t say much other than “I want you to head over to the hospital so they can do some labs”. Ok, so off I go papers in hand (denial in place, I was fine baby was fine and all was great). Once I hit the triage and another blood pressure was taken I was taken to the back and admitted right away. (Still in denial). I sat there in the hospital not truly understanding how big a deal this blood pressure thing was. The word preeclampsia was tossed around but they were waiting on blood work to confirm that.

Once the blood work was back and I was officially diagnosed with severe preeclampsia things started moving too fast for me. My nurse was prepping me for a C-section and I had not even spoke to a Dr. or been told what the hell was going on. When I asked her she simply said “We wanted the Dr. to talk to you first but we really need to move fast, he wants you down there NOW!” Wait! I am only 30 weeks, he’s not ready! Ready or not here he came.

Jayven Lee Johnson is here:

I did not see him or hold him, he was taken to NICU and I was taken, shit I don’t remember where I was taken. I was told he was 2 pounds 13ounces and would be in NICU (neonatal intensive care unit) for at least 6 weeks. Today he is 1 week old. We made it a whole week already. He has not gained any weight yet (please Jayven gain some weight, pretty please) but he is doing well. None of this has really sunk in yet. When I am in NICU I still feel like a visitor. I do not feel like the parent of a sick child. I look at the other parents with sympathy in my head thinking “I’m so sorry, I feel so bad for you, and I wish I could help”.

I am sure this is, in part to my AMAZING ability to act like NOTHING is wrong even in the WORST of possible times. SMILE. FAKE IT. JUST FUCKING SMILE!! (at least until no one is looking and then cry like you mean it!) But even though it all feels surreal, all I can think about is getting to my little man and holding him. He’s so small and all those tubes make him look helpless UNTIL I am holding him in my arms. Once he is in my arms and he looks at me I can tell just how strong he is, how much he is fighting. He is keeping down the little food they are able to give him, he has been able to get off the IV’s (late last night) and he lifts his head and holds our fingers. We love him. He is ours. My little 2 pound baby boy is now the focus of our days and nights. We use the term NICU like it’s as come as lunch. We sit for hours staring at him. I cry. We laugh. His Daddy looks at him with pure love. His sister (my 12 year old baby girl) can’t get enough of him. His brother (my 21 year old baby boy) keeps me positive and focused on the good. So for now this is our life, once again changed in a way I could never have planned. I have so much to say and this blog will provide me that space to do it.

I will warn you that I swear a lot and I tend to be glass is ½ empty most days but I’m working on that. So read on folks I have a feeling our journey begins ~ Jayven is ready and willing to fight to be healthy and strong so I am going to follow his lead.