The Hernandez Family: Year in Review 2012

Oh my! When I think back on all that happened in 2012, it's exausting! But I want to wrap up the year with many of the highlights!



Vanessa started off the year still in the hospital, much to my dismay.

Daddy and Travis went to Supercross and had a blast!

Vanessa came home after 142 days in the hospital on Henry and I's 1 year wedding anniversary. Best anniversary gift ever. Vanessa came home with no O2, no feeding tube, just a pulse ox to keep her monitored.

We went to the Phoenix Zoo when the weather was perfect.

We bought our first home!

Travis broke his arm... bad... He had to have surgery and had 2 pins placed in his wrist.

He got a red cast, his favorite color.

Vanessa kept getting bigger, stronger and cuter!

We went home, for the first time with Vanessa.

Vanessa got RSV and spent a week in the PICU at Phoenix Childrens Hopsital.

Travis turned 6!

Travis started 1st Grade!

Vanessa turned 1!

Travis started doing Tae Kwon Do.

Halloween: A GI Joe Ninja and a Zebra

 

We went to LA to attend my Uncles wedding, and had a wonderful trip. Vanessa got to meet lot's of people she hadn't yet.

We went to the snow.

 



We went to Williams and rode on the Polar Express.


Henry, Travis, Vanessa and I have so very much to be thankful for this year. Looking back at the year, we were blessed to have such happy times, which seemed to seem even happier when compared to the struggles we faced. We are looking forward to a mellow, uneventful 2013!

Happy New Year from our Family to yours!

-The Hernandez Family-

Thanksgiving

Below is the blog entry that I started to write last year on Thanksgiving Day. I never completed it or posted it, but I wanted to share.

"There is so much for me to be thankful for this year. Although this is probably not one of the most joyous holidays that I've had, I still know that I have to be thankful for what I have been given. Vanessa coming off the ventilator in time for Thanksgiving is probably what I am most thankful for, but that is just one item on the list. I'm thankful for my family, who not only supported us earlier in the year with the wedding, but then fired into action with the early arrival of Vanessa. My sisters were so instrumental in helping to keep me sane and maintain some normalcy for Travis. I'm thankful for Travis, my sunshine, who can always brighten my day."

I think if I were to sum up the one thing I was most thankful for in 2011 would have been life, because Vanessa was given a life to live and she chose to fight for it (with some help of course).

Last year, I tried so hard to see what future Thanksgivings would look like for our family, but it was too hard to see. I couldn't envision what sort of long lasting ailments Vanessa would have and how that would change the dynamic of our family. Now, a whole year later the outcome looks so much brighter. Everyday and every milestone Vanessa meets is a victory which lessens the possibility that she may have a form of Cerebral Palsy. Any baby born as early and as small as Vanessa was is at risk for CP, but the problem with it is that you don't necessarily know if your child is affected until they start meeting developmental milestones (or don't for that matter). CP can be minimal and very managable, but the threat of the unknown is the hardest thing.

This year, I'm thankful for health.  Considering that both of the kids were hospitalized this year, you probably wouldn't think that health would be what I'm thankful for. But a broken arm for Travis and RSV for Vanessa aren't long lasting, and they have both recovered, so I'm thankful for health.

With so many things to be thankful and grateful for, if you had to narrow it down to just one thing, what would it be?

I hope you all have as Happy of a Thanksgiving as I am. Even having to work will not diminish the joy I feel in my heart knowing that for my little piece of the world, all is good.

♥ Cassea

Last Halloween

I don't believe I posted anything last year for halloween, because to be quite honest, I didn't feel like I had much that I wanted to share. I feel like halloween was probably the hardest holiday out of all the holidays Vanessa spent in the hospital. Maybe because it was the first, or maybe because she had just been put back on the oscillator (high frequency ventilator) which meant I couldn't hold her, or maybe it was because I felt so broken and the world just kept spinning anyways. We'll just say all of the above.

Here are some never before seen photos of Vanessa last halloween. I knew that we wouldn't be able to dress her up, so I bought some butterfly wings for her that are actually a wall decoration, but they worked because they were small enough to get into her isolette. I never saw them on her, because when I went to see her in the afternoon she was lying on her back. But the night nurses set it up and took these pictures for me. The nurse told me that it was the sweetest thing because the wings were fluttering from the high frequency ventilator. I wish I could have seen that...

And of course we can't leave out my handsome Travis! He was so excited to be a character from Star Wars. He looked like such a cute little Jedi, except when he had the mask on. That mask was creepy.

 

 

I'll get some pictures up of the kids from today in another post. I just really wanted to share how far we've come. Last year, I couldn't even think about another Halloween for Vanessa because I didn't know if it would ever happen. This time last year she was just getting worse and worse each day, and the only thing working in her favor was that she was able to continue to get her nutrition from milk and not IV's. My heart is so full today to be able to spend it at home with my wonderful husband and my two amazing kids.

 

♥ Cassea

aka Grateful Mama

You're so Lucky

I often times think about how lucky and blessed I am. While my kids have had struggles, all kids do at some point or another. There is no perfect child and we all have our own battles to face.

That being said, I have something to share from a parent/teacher conference today. I took both Travis and Vanessa to Travis's parent/teacher conference with me because let's face it, I'm not going to ask someone to watch my kids for 30 minutes for a conference. Travis's teacher knows about Vanessa and her story so I don't have to explain things which is helpful. Today though, a reading specialist who works with Travis also attended the conference. I was holding Vanessa and she asked how old Vanessa was, and I replied "1 year old". The reading specialist looked puzzled, and so Travis's teacher piped in "Both Travis and Vanessa were preemies." The reading specialist looked at me expectantly, so I added that Travis was born at 31 weeks and Vanessa at 25 weeks. She then said to me "You're so lucky". I thought, yes I really am. I get comments like that all the time, and it always causes me to reflect on just how lucky I am. Until she added "I was 3 weeks overdue with my kids and I was so uncomfortable." REALLY?

Now, I don't think in any way whatsoever that she intended to hurt my feelings. I'm sure that she just thought about how uncomfortable she really was. But how thoughtless? Being uncomfortable at the end of a pregnancy would have been a rite of passage that I would have gladly accepted if that meant that my kids were going to be ok.

That would have prevented:

• Intubation
• Possible Brain Bleeds
• Being able to hold my children immediately after birth
• Blood Transfusions
• PICC Lines
• TPN
• Oxygen
• Taking my kids home when I went home

I want everyone to know that I feel so blessed and LUCKY everyday when I look at my 2 amazing children. But I don't feel lucky that I didn't have to endure the uncomfortable stage of pregnancy, I feel lucky that they are alive and that I can hold them, squeeze them and love them everyday.

♥ Cassea

Isn't She Lovely?

Happy 1st Birthday Vanessa Alicia!

Click here to see a video of Vanessa's First Year!

Full Circle

The last few days for me have been very nostalgic. I knew this was coming, but it honestly didn't hit me until last week when I was watching X-Factor. Silly, I know! But while I was watching it, I was brought back to my time spent in the hospital before Vanessa was born. It was probably one of the hardest times in my life, even harder than after Vanessa was born. I had so much anxiety about the road ahead, and yet all I could try to do was remain as peaceful as possible. Some days in the hospital were better than others, but the day that X-Factor premiered was especially difficult. Henry had come to have dinner with me, and left earlier in the evening to be home with Travis. I was so lonely, and the hardest thing was that because my blood pressure wasn't stable so I couldn't talk on the phone all day because I didn't want to do anything to raise my blood pressure. So that evening, I laid in the very uncomfortable bed and watched X-Factor and cried.

This really got me thinking about everything that happened leading up to Vanessa's birth. I did a lot of praying and meditating the days before her birth. I knew what it meant to have a baby born as early as she was, and I knew it wasn't good. I laid there, imagining a curly haired girl playing in the surf at the beach. She was perfect, giggling and playing in the ocean. This is what got me through, was the hope that someday she would be healthy and strong. I knew that this may never be the picture, but I hoped and prayed that it would be.

Lucky and blessed don't even come close to describing how I feel about Vanessa now. Saying that I'm the luckiest Mom on Earth wouldn't even suffice. Sometimes, usually late at night, when Vanessa is giving me trouble I get frustrated, but it usually only lasts a moment until I realize that even the trouble she gives me I cherish.

While I was in the hospital, and then Vanessa for 4 1/2 months, the hardship on Travis was great. This broke my heart. I wanted so badly for Travis to have a sibling, but I didn't ever envision it happening like this. I know now that this was the right decision, but last year when I couldn't see an hour ahead, let alone a year, I didn't know. Travis is so in love with Vanessa, and it does my heart good to see that.

To be continued in a few days... when our precious miracle is 1 year old ♥



This picture was taken on September 17th, 2011. 5 days before Vanessa's birth.
This was a real smile, because it was the day I reached 25 weeks gestation,
where the odds for survival go up dramatically.

RSV.... In July?

Whoa, I have been a bad blogger lately! I guess the fact that I haven't been updating lately is a good sign that things have been on track, but even as I started this blog a few days after Princess V was born, I envisioned this becoming eventually (and hopefully) a blog to update everyone on our family's happenings. So, long story short, I'm back!

The first thing I would like to share was Vanessa's run in with RSV. First of all, seriously? When you talk about "life isn't fair", this incident proves that point. Vanessa, in my opinion, should get a get out of jail free card with the year she's had. Luckily, her feisty nature has seen her through again.

Interesting facts about RSV:

Almost all children will be infected with RSV by their second birthday.

RSV causes respiratory illness in infants and young children, and is the most important cause of bronchiolitis.

In the U.S., RSV infections generally occur during fall, winter, and early spring.

Who is at risk for severe illness? Premature infants, children less than 2 years of age with congenital heart or chronic lung disease, and children with compromised (weakened) immune systems due to a medical condition or medical treatment are at highest risk for severe disease. Adults with compromised immune systems and those 65 and older are also at increased risk of severe disease.

When is the risk for infection the greatest?  RSV infections generally occur in the United States from November to April. However, the timing of the season may differ among locations and from year to year.

As you see, that orange line can't get much lower during the summer months!

I was surreal to be back in the hospital, especially in one where no one knew us. I guess I took for granted the staff that cared for us at Saint Joes. Maybe you can't be completely appreciative until you are thrown in a new situation and see how it is handled? I don't know, but what I do know is that my week at Phoenix Childrens Hospital was frustrating. Not only was it hard seeing Vanessa so ill, but not having Doctors, Nurse Practitioners, Nurses, Respiratory Therapirst (and the list could go on) that KNOW and LOVE Vanessa. While I don't think our level of care was poor at PCH, I just didn't appreciate that they didn't include me in decisions, and I ended up questioning everything they did. Anyways, enough of that!

Poor little thing :(

Daddy got a snuggle in when Vanessa was feeling a little better.

Hope you all forgive me for being a bad blogger!
♥ Cassea

How Old Is Your Baby???

I guess to most parents, the question of "How old is your baby" would go unnoticed and probably would never provoke much thought at all. Throw a micro preemie into the equation, and clearly you have a game changer. I really never put much thought into that particular question until recently. I suppose that being sheltered at home on the island when Travis came home helped a lot, because most people knew his story and knew that he was small. I suppose I was lucky in that respect, that the town knew not to ask, and maybe because he was only 9 weeks early, people didn't see the such a dramatic difference between him and a full term infant. Vanessa is the game changer.

I think back to a week or two prior to Vanessa's release from the hospital to a day that the unit Social Worker came to chat with me. This was not abnormal. Spending everyday at Vanessa's bedside for almost 5 months earned us quite a few visitors. Doctors, nurses, social workers, speech therapists, occupational therapists and more visited us daily, and we enjoyed it. On this particular day though, the Social Worker had something she wanted to prepare me for. She asked me a question that I didn't know how to answer. She asked me "What are you going to say when someone asks 'how old is your baby?' ". I was perplexed. I really hadn't put any thought into it. Maybe because I was so engulfed in the chaos of the hospital, but I just hadn't envisioned those moments when I had Vanessa out with me in the public. The Social Worker I'm sure saw the look on my face, revealing that it hadn't even crossed my mind and explained that this was something she heard from a lot of parents after discharge. She explained that there are 2 ways to handle it. A) Tell the innocent bystander the truth, risking that you may have to share more with an innocent stranger than you would like to, or B) Lie and give Vanessa's due date, which would ward off any uncomfortable questions.

Well, lying to me seemed out of the question. It didn't seem right to discredit all that Vanessa has been through by saying she is something that she is not. So I chose to tell strangers the truth, and found that wasn't much easier. I got responses like "she is really small" or "I just saw another 6 month old, he was much bigger". That stung, if only the knew how small she was and how far she's come.

So, I've come to a few realizations. The first is that when someone asks the dreaded question "How old is your baby?" I reply very vaguely and say "oh, she's little". I've found a lot of success with this, because it seems to prevent any additional questions without being rude or hurtful. Secondly, and most importantly, I've decided the question itself is stupid. Yeah, I said it, stupid. I understand that it is a way to relate to a perfect stranger and acknowledge the beautiful baby with them, but try something else. "What's your baby's name?" would be perfectly appropriate. Please don't feel offended if you have asked this question, because I understand that until you have a 25 weeker, you really can't understand how it would feel. I'm sure that most mamas and daddys are happy to answer that question and see it as a badge of honor, but in the off chance that you come across a preemie parent, you just don't know what response you will get.

Ramblings of a Preemie Mama!

♥ Cassea

Thankful

Hello everyone!

I apologize about the long hiatus. But I have to say that my time is now spent enjoying my family, which it hadn't been for a long time. Honestly, I would rather be cozy with the kids then sit on the computer. However, Travis is at school, Vanessa is napping, and I am now putting off cleaning the kitchen. Sounds like a perfect time to post ;)

I have to tell you, Vanessa is everything we expected and more. She is quite the little diva. She does not like being at all cold and tells us when she is. A few days ago she laughed, it was the sweetest sound you could possibly imagine. We also went for a doctors appointment last week to check her weight/progress. Unfortunately, our primary Pediatrician was out on vacation, but I found out the Vanessa is 10 1/2 lbs! So obviously, she is getting the nutrition she needs. She is still on the pulse ox and even though it's a pain to lug it around, it's very comforting to know that if something went wrong, we would know. We have her 6 month appointment next week, and we'll see if her doctor thinks it's necessary to continue.

It's been crazy to be back at work. I know I was grateful for not having to work until Travis was 1 year old, but now, working with an infant at home, I really get how lucky I was. It isn't easy. But I know that things will just keep getting better, so I'm just moving along.

Vanessa has also slept through the night quite a bit through the last 2 weeks, which I am EXTREMELY happy about. You just don't realize how great 6-7 hours of uniterrupted sleep can be!

Well, this was all the time I had. Now I'm off to get ready for work!

♥ Cassea

Vanessa hanging out in her swing.

Vanessa and Auntie Caitlin in their St. Patricks Day green!

We had surprise visitors for Henry's Birthday!
Nana helping give Vanessa a bath.

Snoozing in her stroller on her Tante Quilt.

Daddy and Travis playing with Vanessa
during her bubble bath.

What's In A Name?

I have been pondering this blog entry in my mind since the day I was admitted to the hospital with high blood pressure. I imagined that had I had another preemie, especially such an early one, that a blog would be most fitting to keep everyone informed. I could see myself being inundated with calls and texts asking about the baby, and I could already see that there would be days that I just wouldn't want to talk. So as I laid in the hospital, I thought long and hard about what I would name my blog. I wanted something that would not only recognize Vanessa, but also Travis, because I envisioned that eventually this blog would not be about the hospital and ventilators and blood transfusions, but about our journey.

I couldn't get the image of a Hero out of my mind. I guess you could partially blame this on having a 5 year old boy obsessed with Spiderman, Batman and Superman. All of which are considered Heroes, but when I really thought long and hard about what a Hero was to me, it wasn't the obvious. I scoured the internet looking for something that would explain my feelings of what a Hero was. This is what I found:

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. -Christopher Reeve

Now you may think I'm arrogant enough to think that this word is to reflect Henry and I through this journey, but that is not the case. My kids are my Heroes. For some reason, they chose to fight and be here with us. They are ordinary kids faced with extraordinary challenges, and many years from now when they graduate college, get married and have their own kids, it won't matter that they came into the world on such a rough road. But for me, I will always remember where they started and how far they have come.

I want you to join me in being a Hero. As many of you know, for the past few years, Henry and I have had a family team for the March for Babies named Team Travis. This year, we will be the Hernandez Heroes. We would like your support! Travis and Vanessa are here today not only because they are fighters, but because of the research that the March of Dimes has supported to help premature babies. Be a Hero for babies!

April 14, 2012
Metro Phoenix
Wesley Bolin Plaza

1700 W. Washington St.

Phoenix, AZ  85007

Please visit our Team Website:  http://www.marchforbabies.org/team/t1800714

This is how what I've come up with for the team shirts so far.

♥ Cassea

HOME!

I'm sorry it's been so long since my last post, but the last few weeks have been a whirlwind. It started out around the 7th of February. By then, it seemed that Vanessa was going to be strong enough to go home. By then, it had been over a week since she had the feeding tube in, and we had trialed her off oxygen and she was doing ok. The plan was that she would come home on Friday, February 10th as long as she was able to continue eating and gaining weight. As luck would have it, on Wednesday night, Vanessa had a miserable night. She was extremely fussy and had a nurse that hadn't had her since days back on the oscilattor. So on Thursday, after a night of crying, she was understandably exhausted. But because of that, she wasn't very interested in eating, so the doctors didn't feel comfortable sending her home. So we waited, again, to give her the opportunity to show us what she's made of. And she did! She had a fantastic weekend, so on Sunday we (me and the nurses) pushed for Vanessa's discharge. The doctor that saw her on Sunday had only seen Vanessa a few times in her life, but after assessing her and speaking with the nurses, he felt comfortable discharging her.

Lisa, our primary nurse who has been with us for the long haul texted me that she was coming home. I was excited, yet reserved. Not only was I concerned about bringing a micro-preemie home, but I really didn't believe it was happening. I've tried to not get excited at the prospect of Vanessa coming home, because honestly, I've been told since the beginning of January "Probably just another week" almost every week until she came home. I learned to contain myself and not tell everyone, because I really didn't want to tell someone for the 10th time that it didn't happen.

But on February 12th, on our 1 year wedding, and almost at the exact time that Henry and I were saying "I do", Vanessa came home. It was the most precious and meaningful gift I could have asked for. With Friday having been delayed, we had a feeling that Sunday would be the day, so to celebrate I made Wedding Day Quiche for Henry and I and brought in some for the nurses, nurse practitioners and doctors.

It was the most surreal moment. I had hoped and dreamed and prayed for it, but I couldn't ever picture it happening. I was able to picture her at home and going on trips as a family, but I couldn't see the day that she would come home. It's interesting too, because with Travis, Henry and I felt like we were stealing Travis when we left; like we had broke him out. It didn't feel like that with Vanessa. It felt like a graduation, a promotion from one step to the next, and most importantly, it felt right.

Vanessa in her "Coming Home" outfit that her Daddy got for her. Everything right now is spring, so we had to put a long sleeve shirt on underneath for warmth. She had to wear her hospital band until she left the hospital.

Vanessa and Travis with Lisa (our angel on the left) and Karen (who took great care of Vanessa in the beginning when she was very critical). I explained to Lisa that the blanket that Vanessa had on her was made by my Great Grandma when Travis was born, and that she had since passed away. Lisa responded something along the lines of "well it's clear that someone had been looking out for her." I immediately teared up, because I know that Vanessa had an army of Angels guarding her, and I believe that Grandma T was leading the pack.

Travis snuggling with Vanessa on our drive home! He is clearly in heaven!

I was worried about how she would be, considering that she had never even been outside, I just didn't know how she would react to the carseat and drive home. She did just fine!

Vanessa's first bath at home!

Vanessa's first night home!

 Thank you to everyone that has been so loving, supportive and understanding. Henry, Travis, Vanessa and I appreciate your prayers, warm thoughts and good vibes.

♥ Cassea

Progress

Sorry everyone for the previous post. I didn't mean to worry anyone, but it had been a rough couple of days. Since then, we've actually made some big progress. First, and I guess one benefit to still being in the hospital is that Vanessa was able to get her 4 month shots (and be watched closely for adverse effects). I was with her for 2 of the 3 shots, and both times she let out one sad cry, and was done! She is one tough girl! Vanessa is 8 lbs 14 oz and growing like a weed! After we got the shots out of the way, on Saturday morning, Miss Vanessa was being a wild one with her oxygen prongs. She was grabbing at them and had them in her mouth and eventually up on top of her nose, so Vanessa's primary nurse wasn't having it, so she just took the oxygen off! That was Saturday morning at 8 am, and here we are late Sunday night and she hasn't needed them yet. It's too soon to say whether she will tire out and need it again, but I'm very excited that she has gotten this far. It comforts me that if she were home on oxygen, and pulled off her oxygen she wouldn't be in immediate danger. We've also made some strides with feeding! Over the weekend I was able to nurse Vanessa for 4 out of her 6 feeds (this was decided upon by her doctor since Vanessa is such a good nurser, but crummy bottle feeder). We are hoping with the recent strides that we will be going home soon, and right now there is a big chance that we will take home a "wireless" baby.

I'm finally seeing the light at the end of the tunnel again... We are making progress, and it feels good!

 Some of our first pictures with no O2 and no feeding tube!

 Bath Time!

 Daddy-Daughter Snuggling

 Vanessa doing her Carseat test. She has to be in the seat for 1.5 hours and not need any oxygen support to pass. She didn't need support, but she dropped her oxygen saturation a little, so we may have to repeat this test. Doesn't she look just perfect in that carseat?

Snoozin... Vanessa has reflux (very common with preemies) so after she eats, it helps for her to stay upright.



4 Months... 123 Days... But Who's Counting?

Today, Vanessa is 4 months old and still has not been outside the hospital. Her entire world is one room that has no windows and it's rather depressing. I had thought that passing her due date would be difficult, but today, 4 months old has turned out to be much harder. I never expected that we would be in the hospital for 4 months. Honestly, I don't know how we made it this far. I think back to all those 60 something days on the ventilator, and how I longed for the days to come, and yet I still find myself looking forward to the future. I dream of having a "wireless baby", where when I pick her up, I don't have to worry about her being hooked on to odds and ends. I dream about Vanessa eating food, sitting up, crawling, walking, talking... I dream a lot about her talking, and I dream about how sweet her little voice will be. I think a lot too. I think about both Travis and Vanessa, and how I love them so much that I don't think they will ever quite understand. But mostly, I pray for the day that my family will be under one roof.

Vanessa is 8 lbs 7 oz, and it looks like the dream that I had a few months ago that she was 10 lbs when she came home may end up being a reality. So, the burning question... Why can't she come home? Right now, Vanessa is on low enough oxygen that she could come home with the oxygen. The problem is now that when she bottle feeds, she is normally only able to take 25-50% of the amount she needs to take. What seems to happen is she refluxes (heartburn for us grown ups) and because it's painful she kind of shuts down and decides not to continue eating. It is so frustrating. The worst part about it is to see her in pain. She has been through so much, it seems completely unfair for her to have been dealt this card as well.

I'm still angry. I'm angry that the woman  with the baby two babies down from Vanessa has a 3 lb baby that is doing so well, that the baby will probably go home before Vanessa. I'm angry that I have been back at work for 3 months, and I only get 2 hours a day with my baby, and that mom spends all day with her baby. I'm angry that I can't be with Vanessa to soothe her and comfort her, and to show her just how much I love her. I'm especially angry that today, when I left I could hear her cry and the thought of her crying when I'm not there breaks my heart.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

 Vanessa had some very special visitors, the Politi Girls!

Vanessa is starting to look like her Daddy!

  

Miss Vanessa is starting to smile!

Swinging away!

Vanessa's World