Farewell Twenty Ten

Looking back how do you define a year? With pictures. With memories. With achievements. With changes. I think what most defined my year is with moments. The small moments in time where my emotion was so real, so raw, so intense, and very much life changing. I can think of these moments and instantly remember how I felt in that space in time. The scars of pain can heal and the joy of the moment can subside but the moments will always be there to remember.

The moment I saw the pink positive on my pregnancy test. The moment I learned the little one in my tummy was a boy. The moment I felt my son kick the first time. The moment the Dr told me I was in pre-term labor. The moment my son was born, I learned that in one instant you could feel such joy and fear in the same breath.

The moment I held my son for the first time. The moment I was told Brayden was sick. The moment I stared death in the face and prayed for it to go away. The moment I walked out of the NICU with my son by my side.

The moments when Brayden would snuggle up in my arms. The moment he looked me in the eyes.

The moment Brayden got sick again.

And tonight at midnight is another moment, one I anticipate will be filled with hope. Hope of the future and a promise of a healthy boy. The hope that my future moments will be filled with more joy than pain.

This year was hard. This year had magical joy. This is the year I grew up. This is the year I learned how strong I am. This is the year I became a mom!

Happy New Year!

"The moment you hold your baby in your arms for the first time, you wonder how could such a tiny bundle create so much emotions within you. And you wonder if it's possible that you've actually brought such a tiny, beautiful being into this world."

1 in a million

Our Dr was talking to us about e coli meningitis. It's most common in premature babies but still pretty rare. Recurrence of the bacteria is extremely rare. Our Dr's have never seen it. We were told B is a 1 in a million baby. When we Google all of this it is very hard to find any information. Most of the data we find is case studies from the 80's, when the bacteria was more common we were told. This a hard pill to swallow, why does it have to be so rare?

We have a new diagnosis.
Ventriculitis: inflammation of the brain ventricles.

Did I loose you yet? This usually associated with bacterial meningitis or a shunt infection. His previous MRI did not show signs of this but that doesn't mean that it was thin enough to miss. The 'theory' is he has had this all along and it was harboring the bacteria, causing the meningitis to return. Again it's all theory but we are weeding are way down to an answer why he got this 3 times.

Treatment: inject antibiotic directly into his reservoir into the brain fluid.

His immune tests are coming back low so he may also have some immune deficiencies. We still have more testing to go with the specialists.

Right now the infection is clearing, slowly, but its clearing. We are still staying in the ICU in B's room, living in the hospital is wearing on us but we are trying to make the best of it. We are tired, frustrated, and just plain sick of anything hospital. I see pictures and read about little newborns snuggled up safe at home and it's disheartening, B is 18 weeks old and he has spent 13 of those in a hospital. It doesn't seem fair! Today is hard and tomorrow is another day...

Surgery cancelled!

Some good news. Surgery is canceled.

After testing the brain fluid from today they determined that the antibiotic is reaching the fluid and there is no need at this time to place another reservoir drain in. They will test his levels again tomorrow and if the fluid needs a boost they will try injecting it from the sight they already put in. There is a small chance we will need to re-visit this surgery but right now we are happy to keep him out of the OR.

So now we wait...wait for the antibiotic to do its job!!

Surgery #2

My how things change in an instant. Instead of preparing to transfer out of ICU we are preparing for surgery #2.

Long story short: Cultures from fluid taken out of B's head from today is still growing live bacteria, meaning the antibiotic isn't working as well as they'd thought. It is some how not reaching the brain fluid quickly.

Solution: put another reservoir in B's head on the other side (surgery #2) and flush antibiotic directly into one reservoir and out the other. Direct antibiotic to the brain fluid will kill the bacteria faster and more effectively. This is the theory at least. The neurosurgeon has only done a double reservoir a handful of times and with good results.

So we are preparing for B to go back to the operating room tomorrow afternoon (29th). This is a hard decision for us but we need to do what's best for B. He is still intubated (breathing tube) from the first surgery in preps for #2. Hopefully we can get it out quickly after his second operation.

Praying for a safe surgery and a successful antibiotic treatment!

When B was sick in the NICU I never would post pictures, they were scary to me. Breathing tubes, IV's, it's a lot to look at. But this is our reality. No parent should ever have to see there child like this, it's heartbreaking. I'm not sure how we do it. Some days I charge through and some days (like today) I'm a mess. One step at a time I guess.

"Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work; you don't give up" -Anne Lamott

Update-Surgery

Last I left B was getting a spinal done to check the meningitis and if the antibiotics were working. They were not able to get a lot of fluid out, not enough to test. They repeated the spinal tap the next morning and same thing. Sometimes pressure on the brain can block off the spinal cord making fluid circulate slowly, not allowing for enough to come out This is the best lamens terms I can describe it.

Last night B was having some Braycardia (heart rate drops) and apnea (low respiratory rate followed by high rate to catch up. catch your breath basically). He was put on a small amount of oxygen (2L of high flow) and it helped him throughout the night to decrease the episodes. These were most likely being caused by increased pressure in his head from the meningitis and hydrocephalus. This morning we met with Neurosurgery and they wanted to put in a reservoir drain in his head (a temporary solution to relieve pressure in the head caused by fluid/hydrocephalus). This would allow them to take fluid to test the effectiveness of the antibiotic, since the spinal tap did not work, and they would be able to drain fluid if needed to relieve pressure and get his vitals more stable.

So a small drain/ reservoir will be placed just under the skin on top of his Fontanel (soft spot). It will be under the skin and look like a small button. They can drain trough a needle being placed into it and extract fluid.

B just came out of surgery and everything went really well. We are waiting for him to come up. They had to put him under and place a breathing tube in for the procedure. The breathing tube will be taken out today once he is more stable. His fluid will be sent down to test the antibiotics and hopefully the infection is clearing up. They can release some fluid and the hope is the breathing-heart rate episodes will decrease. He will stay in ICU in the mean time to be closely monitored.

We are sad that he started to go down hill a bit last night and that our little guy is having his first surgery today. Scared for him but hopeful this will help relieve him of some pain. It's scary when all the neuro/ brain people get involved. We knew his hydrocephalus was significant and we were always hoping to avoid any sort of drain. There is a possibility they will need to put in a permanent drain (A Shunt) after he is better from the meningitis.

Please continue to pray for our little guy, he sure has been through a lot!

Christmas in the PICU

Wanted to send a quick update. B is getting a repeat spinal tap as I'm typing so I thought I'd sneak away for a few minutes to blog.

B is doing well with all considering. He never needed a breathing tube, his oxygen levels are fine on there own and all his vitals have been good, minus a low grade fever. He is only needing tylenol for pain and help with fever. He recieved Morphine the first day and was pretty irretable but has since calmed down a lot. He is getting his much needed rest. His blood cultures are still negative for any bacteria so this time he does not have sepsis (blood infection) like the previous 2 times. I think this is why this time seems so different to us, he seems to be recovering much faster and not needing things like blood transfusions, blood pressure meds, breathing tube, ect. We are grateful for this.

The repeat spinal tap he is getting will let the Dr's know if the antibiotic is working on the meningitis. We aren't anticiapting any surprises because he is looking and acting much more himself.

He has had some trouble keeping his feedings down so we are feeding him only an ounce at a time now and that has been staying down since noon. We will increase slowly and see how he does. If he continues to improve and does better with feedings they will move him out of the ICU onto the baby floor where he will recieve his antibiotic treatments, which is at least 3 weeks as of now.

Once the infection is under control they will begin to look into why this is happening. How does a baby get an already rare bacterial e coli meningitis...three times? He has blood work ordered for Monday to test his immune system. There is also talks of getting an MRI of his back. Maybe it's some genetic defect where his bowel (where e coli live) is leaking or infecting himself? We aren't sure but are hopeful we can find an answer to make sure this never happens again.

***
Today my parents brought us food and we exchanged gifts to make it feel more Christmas-y. B had his little Christmas socks on and recieved his first Tiffanys, a little baby spoon with his name on it!! Thank you Mema and Papa! D and I also got some wonderful goodies too! We are blessed! It's definitely hard being back in the hospital but this is a really nice hospital with a wonderful staff so we are making the best of it. I hope everyone had a merry xmas! More updates to come.

Here we go again...

Sad that I'm writing this on Christmas eve, sad that I'm writing this at all!

Brayden is in the hospital...again. With meningitis...again!

I know, what the hell, what the f*ck, all of the above apply!

So what happened??

Wednesday afternoon Brayden started getting fussy and couldn't really be consoled. He had been constipated and began pooping a lot so we thought it was gas. He then threw up his whole bottle so we though maybe flu? He didn't have a temperature so we decided to watch it. The next 8 hours he was still fussy and crying, unlike him. He kept his feedings down and still had gas. At 2am (Thursday) we noticed he now had diarrhea and shortly after he threw up his whole bottle again. We decided to go to the ER to be safe.

We got the full check up and his blood work came back normal. Suspecting gastroenteritis the ER docs gave him an IV to help with dehydration and wait to see how he does. After about 2 hours we tried to feed him to see if he could keep it down and about 5 min into the bottle he threw up. He was still fussy and looking more sick and the ER docs were confused. Last minute, and after much debate, we decided to do a lumbar puncture to check for meningitis just to rule out all possibilities. We almost didn't do it because this was his 5th one, a lot for a little baby. To our complete shock it was positive!! Meningitis for the 3rd time!

At this point we pretty much went blank trying to process this all. Before we knew it the transport team was on there way. We were at a small ER and he needed to be taken to a high level hospital. He was preparing to go to Childrens Hospital in Milwaukee. They have a pediatric ICU.

*While in the NICU he was at Loyola which is an hour from our house. We picked Childrens because it was a little closer and a fantastic hospital*

So he was transferred via ambulance and checked in. And it begins again...

So, he is doing well right now. Compared to the last two times he seems much different this time. I think we caught it really early. This time he doesn't have a breathing tube, he hasn't needed any oxygen or blood pressure meds, he is much more alert and awake. He does not have sepsis (blood infection) like before. He is in pain so they have given him Tylenol and morphine to cut the edge. We are in a wait and see point right now. Keep him calm and let the antibiotics do there job. As with any ICU things can change in an instant but we are hopeful that it's already on the up!

The PICU is very nice. We have our own room with a bed and a bathroom. We will stay there until B is moved out of ICU onto there baby floor. We will most likely then check into the Ronald McDonald House (yet again).

We aren't sure how long he will be there or how long his antibiotic treatment will be. We have a team of Immune specialist looking at him to determine why? Why did he get this 3 times which is extremely rare. We also have a new neurosurgery team assessing him and his hydrocephalus.

So sadly we are 'living' in the hospital again and it sucks that it's Christmas. But once again we move forward and do what needs to be done for our son. We will all be together for Christmas and that's all that matters.

I will update more as I know. Please pray!! Our little man is such a miracle and I know he will once again fight and show us all how strong he is.

Holding B early this morning. He was very fussy and would not calm down. As soon as I held him he fell right to sleep. Melt my heart!

Yellow gown??...given he has a serious infection the hospital keeps them in isolation until they determine if it's contagious. His isolation will be lifted today because they determined like before it's not contagious.

Merry Christmas!

Merry Christmas from our family!!

 

Cards from Shutterfly.

Baby Must Haves

When I got pregnant and it came time to buy baby crap necessities I just went off of what I heard was good and what looked cool quite honestly. It wasn't until I actually had B home and was using stuff that I really learned what is good, what you can't live without, and what is actually crap!

Word of mouth from moms is the best way to find good products/ tricks. So...for all the new moms or moms to be, here are some things we can't live without in this house!!

 JJ Cole burp cloths. These are pricey and I bought them on a whim and they are AMAZING!! I have since ordered more. Worth every penny. They are the only ones that absorb liquid well and they are huge!

Aquaphor. This is what they used in the NICU and we learned how awesome it was. We use it to prevent diaper rash (when B had diarrhea), use for really dry skin, chapped lips for B or myself. Great stuff!

Carters folded socks! These are the only socks that stay on B's feet. I just found them in 3-12mo size!!

 Sleep Sheep. B loves it! I must say I do too, the ocean sound helps us both sleep!

 Sleep Sak. These were recommended by the hospital to reduce SIDS and they are awesome. It's kind of like a velcro straight jacket but it contains B so well and keeps him warm....and safe from bunchy blankets.

Brayden is modeling his socks while laying on his burp cloth!!

Moms, do you have any products/items you can't live without?? We love recommendations!

Birth Announcement

We finally sent out birth announcements! It didn't seem fitting to send them out when B was born given he was in the NICU and after some time had passed I didn't think I would send them at all, the typical announcements just didn't seem to fit or be appropriate for such a sick little baby. One day, while on Etsy, I stumbled upon the most perfect announcements, especially made for preemies, and I wanted them!

I am so excited that I get to send out announcements at last....like a 'normal' mom. B is healthy and home and these are perfect!

Here is what we came up with.

The Etsy shop made us a pdf and we used a printer from work who gave us a great deal. Announcements found here.

I love my mat!

Play mat=awesome!!

B has his awake times and loves to be on his mat looking at his toys and listening to his music. He is content for a good 45 (precious mommy) minutes! 

Then he seems to tire himself out....and out he goes right on the mat. I just cover him with a blanket until he wakes up. The mat is padded so it's super comfy!! Love this thing.

Mat found here

Weigh in at the Dr today, B had to go in to get his RSV vaccine, 9lb 3.5oz!! Big Boy!!

This mom stuff is hard!

B has been home for 3.5 weeks and one thing I have learned, this mom stuff is hard work!!

When I was pregnant I imagined my life as a stay at home mom and all the things I would do; blog, clean, find some new hobbies, play with B, watch some good shows/movies, have play dates, make dinner for my hubby. I now realize I was a bit ambitious!

It takes ALL DAY to feed-play-change-bathe baby, wash bottles, make bottles, do 1 load of laundry(that's still waiting to be folded), make-eat cereal with 1 hand, and maybe write a quick blog post. All in the mean time I myself have not brushed my teeth (don't judge!) or changed out of my yoga pants. I look forward to 5(ish) when my prince charming (aka hubby) comes home to help. He is so amazing and helpful. Even after he's had a long day at work he will watch B while I take 30 min to myself.

So now that I have experienced a new baby first hand, I have a whole new respect for moms, you are all my hero. Especially moms with more than 1.

Each day I get more done and am learning to be more efficient...so hopefully my 'supermom' cape is just around the corner waiting for me. I have moments of full on stress and I'm learning to take it in stride, its all a learning experience. And whenever I feel overwhelmed or totally exhausted I just look at this little mans face and its all worth it.

B meets The Clauses

B got to meet Santa and Mrs Clause for the first time!

We knew we would not be venturing to the germy mall this year to get our Santa pics and pretty much assumed we would be waiting to get any until next year. My good friend Amy's mom and step dad dress up as The Clauses each December to do appearances at the fire dept-restaurants ect. They offered to have B over to their house to take some pictures last night before they headed out for an event. We jumped at the chance to get little man with Santa, so nice of them.

I got to sit on Santas lap for the first time since I was mmmm....12 maybe. So fun!! I asked for diamond stud earrings :-) 

Thank you again Donna and John aka Santa and Mrs Clause!

A wonderful birthday!

I had a fantastic day yesterday. While feeding B at 8am I saw that I already had 44 emails from blog comments/FB comments/and other emails. They kept coming all day long which was amazing, I loved reading each one!

My mom brought me Starbucks in the morning, D brought me Portillos (chicken pecan salad, my fave) for lunch, my P's brought us Olive Garden for dinner, and then we ate the most delicious chocolate cake, also from Portillos. It's my all time fave cake and luckily we got a whole one so hello leftovers!!

I got some wonderful gifts from my family, I felt so loved. I must say the sweet mommy card and MOM figurine from B (aka hubs) melted my heart more than anything.

The big 2-8

Another birthday and another year closer to 30...yikes!! It's actually not as scary as it used to be. Since getting married and becoming a mom I am embracing getting older. I like my 'older self' so much more than the 'younger/ cool' me, although I still have some cool in there somewhere. I am more confident in my own skin and happy with life right where I am. I'm sure spending 3 months in the NICU has given me a gray hair or two and a few extra wrinkles but hey, I earned  them! I'm not the skinniest I've ever been and not the most put together, thank you B for every 4 hour feedings, but I feel the most beautiful I ever have!

So happy 28th to me!! 27 was a crazy, happy, scary, roller coaster of a year! I can't wait to see what 28 brings!

Christmas Time!

Why is it that Christmas seems better when you are a mom?? It feels like it brings the kid who believed in Santa out again, even though I still get Santa gifts, thanks mom :-) I am all about it this year. I bought my big tree, stockings, ornaments...the whole nine. And every time I order my chai tea at Starbucks and I get the holiday cup I smile...love this time of year.

B is wearing his little Christmas sleeper today! 

Stockings: Pottery barn kids
Ornaments: mall kiosk

In other news...Thursday is a big day in the Helvey household. This momma in turning 28!! I am treating myself to a mani-pedi tonight. D is watching little man after work and I'm taking a relaxing few hours at the spa!!

First snow

We got our first snow!! Secretly not a fan of snow but I do like the feel of being cozy inside while it's a winter wonderland outside!!

Sleeping baby, Starbucks (my wonderful hubs braved the snow), naps, and Eclipse!!

Preparing to hibernate

D, little B, and I are preparing for our winter hibernation!! Even though we are FINALLY home we will still be pretty much isolated.

Preemies are at greater risk for RSV in cold season (oct-march). This is the cause of common illness in babies. Most have some form of it by age 2. It is extremely contagious. While in most babies it can result in a common cold, in preemies it can be fatal with more serious infections like pneumonia. Fun huh?

B qualifies for the RSV vaccine because he was born before 32 weeks and has a history of illness. He will get the vaccine once a month until cold season is over for his first year. This was a long approval process with my insurance and the hospital but luckily he was approved. At $2000 a pop no wonder insurance is so picky about it. And the best part...an in home nurse comes to our house to give it to him so we don't even have to leave to go to the dr!

So on recommendation of the nurses, Dr's, and mommy instinct...in hibernation we go! We will basically only be leaving for Dr appointments and Christmas. Once he is older, closer to Spring, we will be venturing out more. And sadly he wont be able to meet his cousin Zoe until later, kids carry the germs more than adults.

I'm nervous about this because I go stir crazy!! We will just need to have mommy-daddy nights out and make sure our visitors are healthy so we can still have 'a life' basically. This is just a small step in time and if it will keep B healthy I wouldn't have it any other way.

I'm also excited...all the more excuse to have B all to ourselves to get to know him more outside the hospital. What a special time for us, finally having our little newborn home.

So cold and flu season...stay away from us!! We'll see you in the Spring!

Congested!

B has his first (very mild) cold!! Ugh....

We had his wellness appointment with his new pediatrician scheduled for tomorrow (Thurs) and this morning I noticed B was sounding congested and had a slight fever. Not taking any chances, I changed my appointment to today.

Dr said his lungs sound great, he isn't acting sick, he's eating fine, but he is slightly congested. We just need to watch him the next couple of days to make sure it doesn't worsen and sleep upright as much as possible. So as if this preemie mom wasn't paranoid enough!! Can I bathe in hand sanitizer?? LOL

He was 21" and was 8lbs 2oz. For those of you keeping tack that's 1 pound in 1 week. Holy Buddha child!! We decided to cut his preemie fortifier in half and re-weight him next week. If he keeps gaining like that we will cut the fortifier out completely.

Hanging with little man...and yes...I look as exhausted as I feel!