Evan has a cool room

Most mommas have their child's room ready and waiting for them well before they're born.

Carl and I had been planning on moving to a two bedroom home or apartment shortly before or after he was born, so ALL his stuff was still safely tucked away in our closet, living room, dining room, etc.

And we didn't move until later because we were so busy trying to adjust to the hectic schedule of having a NICU baby and never being home.

So when we finally moved in December, I was excited to start getting not only the necessary things, but the fun little decorations that makes a kid's room fun.

I got all kinds of monkey and jungle decals to put on the walls, curtains, bedding set.... And I've slowly been putting it together.

It's been a slow process because, quite frankly, I STILL don't have much time on my hands. And I have been reluctant to have a beautiful room sitting and waiting for Evan, when we have had no clue when he'll be home. It's hard to go into his room and try to imagine him there. Carl and I "joke" (somewhat bitterly) that we'll need to convert the bed to a full size, and give Evan the keys to my car so he can drive himself home by the time he's released from the hospital.

But now the nurses and doctors are talking home. I spoke to Evan's doc yesterday about the time frame, and he said mid to late March.
Now, let's remember that this is the same doctor that told me a month ago "4 weeks maximum" to wean Evan from the ventilator. Now he's telling me later. So, you all will excuse me if I take his words with a grain of salt.

But to be told a DATE...... Wow. So I sucked up my anxious feelings about being in Evan's room and set about decorating.

We're still waiting on the gilder/rocker, which is set to be delivered shortly, and we have to set up the "practical" storage area- where his toys will go and all his medical supplies. I also still need to get a dry-erase board so I can write down his weekly schedule- you know, doc appointments, weekly trach changes, etc.

I'm starting to get a little excited. Carl and I will be doing trach CPR training this weekend.
Hopefully that's a big indicator that this time we're finally going to be coming home. :-)

Another update of progress

It's been a busy week in Evan's world.

1.) He met his cousins, Ariana (9) and Logan (5), for the first time

2.) We have started him on rice cereal once a day to give him something with texture and he's been doing well. He doesn't take much, but he sits in the high hair like a little gentleman, and will smack a lot when we give him the rice cereal. He's reluctant, still, to have the spoon go far into his mouth, but it's getting better.

3.) He gets to sit in an exersaucer... We're working on strengthening his legs and his torso. It's not yet exactly FUN for him, but it's a change of pace.

4.) He now is off the ventilator 8 hours a day, 4 hours in the morning and evening, and is doing great. We've been going up on the time about every other day. Not surprisingly, it wears him out, so he tends to nap more and sleep harder, because his little body is working harder to breathe, so two days to adjust isn't asking too much. If we continue in this fashion, we might see completely off the ventilator by March 9th. After that, there really isn't a reason why he can't come home shortly after.

5.) Carl and I have taken to taking him out on stroller rides around the unit while he's on the trach collar once a day because we can now fit everything he needs into the stroller. Again, it's a change of pace for him, but he finds it to be a lot of fun.

6.) He got his helmet yesterday, and he's adjusting to it slowly. He has no problem sleeping in it, and seems perfectly comfortable, except when we take it off or put it on. He still looks adorable even in a helmet with skulls and crossbones (I HAD to pick that one.... I mean, first of all, it's just so cute! And secondly, how ironic is it to put skulls on a helmet to reshape his skull?)

7.) It appears we might just see his first tooth soon. I massage his gums frequently to help with the speech therapy, and the bottom front teeth feel closer to the surface than before. He bites my finger often, and chews on his tongue. I judge that this will be a big step to help get rid of his oral aversion because he actually WANTS things in his mouth so he can chew on them.

8.) He got his 6 month vaccinations. In typical Evan fashion, his feelings were VERY hurt for two minutes after, and then he was all smiles. So far, he really hasn't had an adverse reaction to vaccinations, not even being fussy.

9.) Monkeys EVERYWHERE! We almost have Evan's room completely decorated. It's a jungle theme, with mostly monkeys, and the occasional lion or zebra thrown in. I'll be sure to post pics once I have all the wall decals up and curtains in place. It's going to be such a cute boys room. :-)

10.) The scab fell of Wednesday night from his belly wound to reveal whole and healthy pink skin beneath! We are sooooo excited about that. Now, it just needs to toughen up, but IT'S HEALED! One less place to worry about infection!

Now it's time for me to get my happy butt up to the hospital so we can enjoy more of EVAN. Soooooon we'll be home. But I leave you with pictures of his progress this week- Enjoy!

Trach collar progress

Evan has been doing fantastic the past few days on his trach collar. We had him off the ventilator for 3 hour yesterday, an hour in the morning and two in the evening. This morning he'll be off for two, and if his blood gas is good, he'll be off for 3 hours straight tonight.
If he continues to do well, the pattern will continue: three hours Monday morning and four in the evening. 4 hours Tuesday morning and 5 evening... Until he's off 18 hours total throughout the day.
If we continue at this pace, he will be off the ventilator by about March 1st.

He's also back to getting his feeds at the same rate as before his surgery. We'll be reducing them to less time this upcoming week so that it's easier to feed him at home.

And he is on room air while on the ventilator, and only a slight amount of oxygen while on the trach collar.
I'm very happy about that, because he might just come home without any supplemental oxygen.

Oh, and he is being fitted for a helmet, because with all the laying in bed, his head is a little flat. He'll have to wear it for 12-14 weeks for 23 hours a day. But it's worth it, because it will give him a "normal" shaped head, and his eye, cheek, ear, and forehead won't be slightly asymmetrical, like it is now. I figured he's going to have enough things that make him different- lets not add to it.
Other helmets I've seen come in just a utilitarian white, but this service already has patterns and colors we can get on his helmet. I picked a black background with white skulls and crossbones.
I thought it was ironic, and frankly black goes with everything. :-)

I'm hoping that he will be able to get rid of the trach after cold season passes. That's the next goal after getting him off the ventilator and home.

I still have no clue when he'll be home. But we can ALMOST bet it will be in March.
IF we get him weaned down as fast as it seems.
IF nothing goes wrong.

But I am so hopeful. :-)

The "H" Word

It is kind of funny how, when your baby is stuck in the hospital, it seems like the word "home" becomes a dirty word. As a parent, you'll ask questions about it, talk about it unceasingly, every day. The reactions you get from doctors and nurses vary wildly, just as the reaction a two year old would get for saying a "no-no word". I've gauged all the reactions, from shock (how can you bring up home when you don't know if he'll survive?), condescension (poor woman doesn't even realize how long this will take, how silly of her), pity (oh how sad, she's wishing for something she can't have), defensiveness (what does she think? That we can just POOF, send her kid home?), evasiveness (i hate telling bad news, why do they have to ask questions I don't know the answers to?) and frankness (I gotta tell her my opinion, because no one else will). It's literally like pulling teeth.
I have literally been told by NICU staff "we don't say the "H" word around here."
Sorry to make you all uncomfortable, but I will continue to ask.
I will talk about it daily. I will sigh with wanting, I will laugh about envisioning the future day we go home, I will cry with frustration over the time that it is taking.
Because HOME means my baby is well enough, and HOME means I can finally spend all my hours with Evan. HOME means seeing every smile, tear, every laugh and cry. Being able to comfort him during the night, play with him, snuggle and read to him, without the strict schedule and watching eyes of the hospital staff.
HOME means our little family is complete, and no matter what I will continue to say it and ask when we'll be there.
Because I refuse to allow anyone to take the hope of HOME from me.

It has been a 6 1/2 month journey, and we are finally starting to see the light at the end of the tunnel. Tomorrow, we start trach collar trials. He will be weaned completely off the ventilator (if all goes well) within about a week and a half.
That is only if it goes well, but I sure hope it does.
One lesson that Evan has taught me is that you have to have hope, tempered with practicality.

We'll be HOME soon. :-)

Updates

Alrighty, so it's been a few days since I updated about Evan.  Mostly because it's been hectic, and my computer decided to quit on me again.

That being said, here's the latest news:

As you will recall, Evan had his g-tube surgery on Tuesday.  Wednesday, he was still recovering, but the surgeon decided to try him on a small amount of Pedialyte, to see if his tummy had recovered enough for him to tolerate feeds.  Unfortunately, he didn't tolerate it very well- he spit up the entire amount.  So it was back to relying solely on IV fluids.  Evan was pretty fussy Wednesday, feeling a little beat up, which I can't blame him.... surgery is tough, and the day after HURTS.  So I held him as best I could with the new wound on his belly, and kept him company throughout the day, and evening.
Thursday, he was a new boy.  He smiled again, grabbed his bear, and just generally felt a lot better.  We went a lot longer without pain meds- most of the day, actually.  He even started kicking some.  I held him more, getting the right position to hold him between the new incision, trach, and ventilator tubes and IV.
Friday, we could tell Evan was feeling up to his old self, mostly.  He had a poopie diaper, he was playing and kicking, and REALLY enjoyed snuggle time with Momma.  We decided to put him on 5 ml of formula through his g-tube over an hour to see how he would tolerate the continuous feed.  He did awesome.  So yesterday, we bumped it up to 10 ml per hour.
Oh, and Friday, his doctor decided to lower the constant pressure Evan's getting through his ventilator.  And his CO2 levels have been the best EVER lately- which really excites us.  We're hoping to get back to some of his normal routine tomorrow- and hope that he'll start taking a larger feed soon.  Sometimes you just have to go slow with these things.  But I'm keeping my fingers crossed that we'll be able to start trying out the trach collar this week- a trach collar is where they take him off the ventilator completely, and allow him to breathe on his own with no assistance.  The plan is to try it for about 15 minutes the first time, check to see how he's doing, and then the next day move up to an hour.  If we see he's doing okay with that, we'll continue to try it every day for longer and longer, until he goes the entire day without ventilator assistance, and just have him on it at night.  Then, we'll start weaning him off the ventilator at night.  Once we're down to just a couple of hours a day on the ventilator, we'll completely take him off.
We might need some supplemental oxygen, but that's fine.  If we can just get him loose from the ventilator would put me on cloud nine.
So here's hoping!

Oh, and I can't neglect sharing some cuteness with NO TAPE on his face.  :-)

"Momma, I sure like snuggle time."

HEY!  Who wants to PLAY?!?

The g-tube

Well, as predicted, yesterday was busy. Carl and I fit in as much luvvins before surgery at 3. They came and got him early at 2:30, and we walked down to surgery with him. He was in a good mood the whole way, looking around him and taking in the surroundings.
They wheeled him in directly, and Carl and I went to wait in the waiting area.

Time went by, and at about 4:10, we were called into a consultation room to meet with the surgeon- which scared the crap out of us, by the way, since all the previous 3 surgeries, the surgeon came out to see us in the waiting room. We anxiously waited trying not to think the worst, and the surgeon finally came in and smiled to reassure us. WHEW!
So, he told us, he had a hard time finding Evan's stomach because it was located more to the back, and had liver and spleen in front of it.
So instead of the button they had to, for now, place a tube.
But the good news is that his ventilator settings have gone straight back down to where they were before.

He's doing well this morning- getting a small dose of morphine here and there, but mostly he's pretty okay

Evan's Story- Month 1

I had so much to do yesterday that I didn't get a chance to post about month 1 yesterday.  Evan is going to get a g-button tomorrow, so I am going to be busy then too. 
However, I still feel the need to post about Evan's progress over the past months, because we will be coming home from the hospital soon.  It will be a very, very happy day, and will mark a huge milestone. 

Back to where I left off-

July 31st- Evening.
Evan made it through the surgery to place the silo just fine.  Carl returned to my recovery room in the hospital, and showed me the pictures he had taken.  I got to move around some time later, when the spinal finally wore off, and we loaded me into a wheelchair to see Evan in the NICU. 

He was on the oscillating ventilator, which is a different sort of machine- it gave him hundreds of tiny, small breaths a minute, causing his body to vibrate.  He had a line going direct to his arteries, placed by the surgeon to provide nutrition and medications.  He had a catheter placed as well. A tube ran through his mouth to his stomach to pull the digestive fluids from his stomach so that they wouldn't eat away at his stomach.  It was shocking to see my boy laying there surrounded by machines that would keep him alive.  But, oh I loved him so very much. 
He was very sedated, of course, having had a VERY big day.  After talking to him a bit, Carl and I went back to my room


August 1, 2011- Exactly one month before Evan's original due date.  We returned to the NICU that morning to see how Evan was doing- we found that the surgeon had already been there to reduce the size of Evan's silo, by pushing gently on the bag and, oddly enough, tying it off at the top. 

 But, dang, he was beautiful. 



August 5, 2011- It took them only 5 days to push his organs in enough that the surgeon could wrap his belly to prepare for surgery to close him. 

He was starting to swell from the trauma of having his organs pushed back in, and was still receiving all his nutrition through the arterial line. 

August 8, 2011- Evan had his closure surgery.  We were incredibly nervous.  We had no idea if they would be able to achieve closure, and how Evan would react to such an invasion to his body.
But finally, the surgery was done, and the surgeon met us afterward, told us that Evan did really well, and that he was able to close him us with the aid of a mesh patch to help with muscle closure. 
Now it would be a waiting game to let him heal, and get him off the many medications, get him feeding, and wean off the ventilators.  They also told us that he would swell some more from the trauma of the surgery, which is a typical reaction for a baby to any kind of surgery.  He had his first poopie diaper at this time, which was a BIG DEAL. 

August 14, 2011- Half a month had gone by, and we had barely seen our boy move much, or open his eyes open hardly at all. 
But we were still encouraged by the little bit of progress. 

August 17, 2011- Evan was making progress, but we then had a small setback in the form of him being diagnosed with pulmonary hypertension.  Pulmonary hypertension is abnormally high blood pressure in the arteries of the lungs. It makes the right side of the heart need to work harder than normal.They had started feeding him a little of breastmilk via NG tube.  It started out at just 2 ml per hour. 

August 20, 2011- I got to hold Evan for the first time.  The joy at this was not even diminished by Evan's circumstances.  The nurses had to rearrange his tubes and machines, but they managed it- I got to hold him for 20 minutes before his oxygen saturation levels began to get too low.  BUT I HELD HIM.

August 25, 2011- Evan was still swelling.  The nurses began moving him around more.  They did baby massages.  He was getting dieuretics to help rid his body of the fluid he was retaining.  But he still weighed 8 pounds.  Considering he was just receiving the nutrition he needed to stay alive, but not gain weight, and his weight at birth was 5 1/2 pounds, it was a shocking amount of fluid retention. 

And Daddy got to hold Evan for the first time. 


August 30, 2011- Evan began looking so much better.  We had attempted to take him off the ventilator, but he did not take to it.  Daddy and I had changed Evan's diaper, and Evan turned blue.  It's scary to think that you can't change your child's diaper without him having an issue. 

He began waking up more at the end of August, and in this photo had both mine and daddy's fingers in his hands. 

Looking back at all this, and reviewing my old journal's posts for the month of August, I can't help but shake my head.  I truly believe that the only thing that kept me going and staying moderately positive was the belief that Evan would be home before October, and my enormous love for that boy. 
I might have cried, I might have been angry, or depressed, but the majority of my time and focus was on him. 
And despite the circumstances, I have felt since my pregnancy that being a Mommy is one of the best things in the world. 

Tomorrow, I will continue Evan's story- months 2 & 3.  And I will be sure to update on his surgery as well.  :-) 

Evan's first 6 months -Pregnancy and Birth

I wanted to re-visit Evan's first 6 months- to remind myself and put it into perspective just how much of a roller coaster we've been on since we found out about Evan's condition at 18 weeks of pregnancy.

I think it's important to remember these things, although it can be painful- but we've come a LOOONG way.  And because it's been a long journey, with lots of information to impart, I'm writing this in 7 parts.  So with no further ado, we'll start at the beginning of Evan's story: Pregnancy, diagnosis of the omphalocele, and birth. 


December 31, 2010 @ 11:49 PM- I found out I was pregnant shortly before midnight on New Year's Eve.  I had been acting different, feeling odd.  Carl and I had decided to try for a baby the summer of 2010- So I took the pregnancy test, and was so shocked and excited to FINALLY see a positive sign!  Carl was watching the New Year's Eve show on TV in the living room, and I walked out and told him.
His reply: "No way!"  I showed him the test, and said (so eloquently) "Ummm. Yep."
It was the best New Year's Eve ever.

January 28, 2011- I went to the doctor, who did an ultrasound, and confirmed our pregnancy. I was 8-9 weeks pregnant.  We did standard blood work to be sent off, and I settled into my first trimester. 

March 17th, 2011- We were referred to a maternal/ fetal medicine office because my doctor felt I needed additional monitoring because I have a duplicated uterus.  So we went to the appointment and had high hopes we might find out if the baby was a boy or girl.

The ultrasound tech spent quite a lot of time getting images, which I thought was a little odd, but Carl and I were in high spirits and joking and laughing- we got to see our little man moving around for the first time, and saw his little face.
After the ultrasound was finished, the tech left the room to present her findings to the doctor.  I got a little more anxious waiting for the doctor to come in.... it seemed to take forever.
Finally, Dr. Papa entered in the room, and sat down at the ultrasound machine next to me.  She introduced herself to us, and warmed up to tell us the bad news.  I remember her being incredibly warm and caring- she said "Your baby appears to have a very rare birth defect- This affects the abdominal wall, and we're not sure if it is an omphalocele or gastroschisis... But the long and short of it is that some of the baby's organs are outside the abdominal wall."
She explained the difference of the two diagnoses, and recommended an amniocentisis to be done.  So we did and anxiously awaited the results. 





April 7, 2011- We found out the results of the amniocentisis, and all the results were normal, AND we found out Evan was a boy.  :-)  We were so happy to find out both.


May 14, 2011-

I found an online support group in the form of MOO's (Mothers of Omphaloceles)  I was so very encouraged by all their stories of babies going home soon after birth, and frightened by the stories of hardship and loss.   But I learned so very much about Evan's condition as he grew inside.  He was an active little fella, and I loved all his movement.  He started showing personality even then, which was a highlight of what was to come.















June 12,2011- Evan was going to be due on September 1st, but I started having the feeling I might not make it all the way to my due date by this point- he was growing, and we were getting very frequent ultrasounds at this point.  But he seemed to be happy and content to sit and wait until his time came....

July 23, 2011- I was feeling very large, unwieldy, and completely PREGNANT.  I was tired all the time, couldn't sleep more than 3 hours at a time without getting up to pee, and fell asleep on my recliner at the drop of a hat.

July 30, 2011- We had Evan's baby shower- I was irritable, worried about being 2 hours away from the hospital of our choice, and on the way home, I had a mini panic attack because I just had this feeling that I NEEDED TO BE HOME..  I got home, we unloaded the presents, and had dinner.  I remember I was exhausted, and ready for bed. 



July 31,2011 @ 9 AM- I slept in for once, although I vaguely remember getting up to pee.  My back kinda ached, but I had driven 4 hours total the day before, so I wasn't really worried.  But as time went by, it just got worse.  By 10:30, I had a suspicion I was in labor and began timing the pain, because it came in waves.  Over the next hour, I timed the pain to come every 4-5 minutes, and it was getting more painful.  I called my doctor's office, left a message, and the on-call doctor called me back and told me to go to the hospital- he would meet me there.


11:45- Carl and I arrive at the hospital.  He dropped me off at the emergency room entrance while he parked the car, and I waved away the offer of a wheelchair by the attendant there.  I waddled in, and the lady at the front desk asked, "You coming in for yourself?"  I smiled and said "Yep!"  She told me to come on back and get in the wheelchair, and they;ll have someone take me up to be monitored.  I sat there for about 5 minutes, then a young man wheeled me to the elevators.  As we were going up, I felt a hard contraction, and my water broke.  I said to the young man "Ooops!  Oh, crap, my water just broke."  He said "REALLY?"  I replied "Oh yeah."  as I texted the same information to Carl.  So we got off the elevator at our destination, and the young man told the nurses "Her water just broke in the elevator- we left a trail."
They rushed me downstairs to a delivery room, and asked me to get a gown on, while I was on the phone with Carl, trying to tell him where I was.  The contractions were coming hard and fast, and I couldn't get the presence of mind to tell them that Evan would be born with an omphalocele.  Luckily, Carl found us quick, and told the nurses about it all.  They checked me, and I was dilated to 6 cm.  We waited a short while, for the doctor to come.  They called the pediatric surgeon, and got everyone situated.  They prepped me for a c-section, because my doctor had previously determined it would be too complicated and too risky to chance a "natural" birth.


About 12:45 PM- They wheeled me into the operating room.  They informed all present about the situation, that we were performing a c-section, that I had a duplicated uterus, and that Evan has an omphalocele.  There must have been at least 15 people there, between the on-call doctor, the assistant, anesthesiologist, neonatologist, and the nurses.  They gave me the spinal, tested to make sure it was working well, and Carl came in once the paper barrier was put up between us and my belly.
They began the c-section, and Evan was born at 1:36 PM.


I sat there on the operating table, just hearing Carl's quiet "oh wow......wow".  No cry was heard.  I was on alert, and heard one doctor say "we've got some fluid, here."  I heard people moving, and the anesthesiologist leaned over and said, "It's okay, they're passing him onto the neonatologist." 

They began working on me again, and I was just straining to hear anything.  Anything at all.  Carl was peeking around the paper barrier.  He later told me that he couldn't even see what they were doing with Evan because of all the people working on him.
I still waited to hear any cry from Evan.
Finally, after what felt like forever, the neonatologist approached us, staring down at me- he said "We've got him stable- his omphalocele was ruptured.  He also wasn't breathing on his own, we had to intubate him.  We'll take him to the NICU to prepare him to see the surgeon.  We might be going to surgery."
I was already numb from the spinal, but I felt and cold, cold feeling come over me when he said the omphalocele was ruptured.  I knew what that meant.  I knew that because he was a month early, his lungs might not be as strong, and that with the rupture, we would have to worry about infection, twisted bowel.... any number of problems.  I remember closing my eyes tight at the doctor's words.
They wheeled Evan by in the incubator, and stopped for a few seconds so I could see him.
And the cold feeling went away.  I was still horrified to see my sweet baby boy, the way he was.  I already loved that little guy, but the love grew to encompass my entire being the moment I saw him.  I couldn't look away.  I wanted to touch him, but couldn't move my hand more than an inch.

They wheeled him away, to the NICU.  And finished working on me.  I was moved to a gurney, transported back to my room, and the next few hours are pretty much blank.  I literally, at this moment cannot really remember what happened.  I know the surgeon got ready for surgery, and they placed Evan's silo to hold his organs, because his liver, small and large intestines were exposed.
Before they took him to Cook Children's across the street for the surgery, they wheeled me out of the room to see him again, briefly.  Carl went with Evan to wait for the surgery to be done, and took pictures for me while my parents kept me company.

That's the end of this installment of Evan's story.  I will continue tomorrow, with Part 2- Month One.