Universal Healthcare... Anyone???

Ok, so I rarely come on here to vent, or at least I try not to. But I'm just so frustrated today that I have to share.

When I was pregnant with Travis I had health insurance for myself under my moms policy, but Travis wouldn't have been covered unless my mom was considered a guardian. So Henry and I had planned on applying for MediCal (California's low income health insurance) before Travis was born, but when Travis was born 9 weeks early we hadn't even started the process. It was no problem though as Henry and I met with a social worker at the hospital about a week after Travis was born and everything was taken care of. Of course I had my own medical bills from my very expensive, middle of the night, helicopter ride and the c-section, but for Travis I never saw a bill. Everything was taken care of and the only thing I worried about was getting to the appointments. Every developmental follow up, RSV Shot, and coverage for the apnea monitor that he was on for 4 months was covered. Henry and I didn't take advantage of the system. It helped us when we needed it. We probably would have qualified for WIC and food stamps, but we really didn't need it and I never wanted to abuse the system. We didn't even get health insurance for Henry and I because we only needed it for Travis.

Fast forward 1 year, we had moved to Arizona and I had started work at Discover with full benefits. I was feeling pretty dang awesome considering that everything was falling together so well. Of course we struggled. Henry worked 3 jobs while going to school full time (don't ask me how he did it, because it was insane). But we just made it work. We hardly ever used our private insurance, really only for Travis's well visits and if Henry or I got sick with a cold that we couldn't shake.

So now, in the past year and a half that I've really needed our health insurance with Vanessa, it has been the most stressful experience imaginable. The bills were so overwhelming that I couldn't even look at them, so eventually most of them went into default. I've been able to catch up in the past 6 months, but what I don't get is how I could have managed it better with a micro-preemie. I went back to work 4 weeks after having her, and spent every waking hour split between the hospital, work and home. It was exhausting enough to keep up with my regular bills, let alone new ones that I didn't understand. And then, 3 months after Vanessa came home, Travis broke his arm. 2 months later, Vanessa got RSV. Bills, bills, bills... And all I can think is if I was still on state health insurance, these wouldn't be things I would have ever worried about. I wouldn't have freaked out on the drive to the hospital that Travis was at about how much this was going to set us back. I wouldn't have waited until Vanessa was limp in our arms from RSV to get her to urgent care. My mind would have been exactly where it should have been, focusing on the health and well being of my kids.

It's so frustrating. To add insult to injury, at the end of 2012 my doctor recommended that Vanessa get a second season of RSV shots because she had gotten the virus over the summer. He had to send a letter and basically beg/borrow/steal to get the insurance to cover the $5000 shot that has to be delivered monthly. Our insurance covered it, probably angry at the fact that they had to pay for her to spend a week in the hospital over RSV which probably cost them a pretty penny. But my luck would have it that January 1st we got a new insurance plan. Start over. When the clinic called to set up my Vanessa's appointment for her RSV shot I explained my concern that the doctor had not sent the letter to the new insurance, so we should wait. The clinic said "oh no, don't you worry, Blue Cross/Blue Shield is on automatic approval".... Wait, WHAT? You would've thought I had won the lotto for how excited I was, only to find out a month later that the shot wasn't covered. $5000... I don't even know what to say. I almost cried on the phone today with the doctors office, the clinic, the insurance and the pharmacy that supplies the shots. I spent an hour on hold with all those places just to be given the run around. I'm trying to not lose hope and I know it will all work out in the end, but I just can't stop comparing this to Travis. Travis, who got the entire season of RSV shots and the only thing I had to do was schedule the appointment.

How is that fair?

Siblings

When Travis was born, my world changed. I welcomed it. I had an idea of what parenting would be like, but I never expected to love him so much. I guess you just can't know that kind of love until your a parent. A worried, delightful and sometimes exasperating love. I never considered whether my heart would have enough room for him, it just did.

I wanted Vanessa for a long time. I wanted Travis to have a sibling, because I have never intended for him to be an only child. But when Travis was born 9 weeks early, it scared us. Henry and I decided that we would have to wait for Travis to be in school before having another just in case we had another preemie.

It wasn't until I was hospitalized when I was pregnant with Vanessa that I had regrets. I didn't get to see Travis everyday and when I did, it wasn't for long. I didn't get to cuddle him, because most of the time I was hooked up to an IV. He was scared of me, and I could tell. All I could think of was how selfish I was for wanting another child.

And then, Vanessa was born so small and so helpless (it seemed at least). Travis couldn't see her, he wasn't allowed in the unit because of a Whopping Cough outbreak. Then, the day after Vanessa was born, she took a turn for the worst. We thought we might lose her, and all I could think was how would I explain it to Travis. She struggled for a few days, and these thoughts kept playing through my head. I cried to my mom and explained that I just didn't feel attached to her. I look back and think it was probably because I was afraid to touch her and she was too fragile to hold.

It broke my heart to feel the way I did. But little by little, breath by breath, my heart made room for Vanessa. Each day it got better and better, and when Vanessa finally came home and Travis was so happy, I knew as painful as it all was, it was worth it.

Now, I am constantly reminded of how much Vanessa was meant to be part of our family. Travis doesn't go easy on his sister, and he is probably the only one that doesn't look at her like the little miracle that she is. Travis just loves his sister, plain and simple. He picks on her and praises her, and always loves to make her laugh. Vanessa is enamored with her big brother. The minute she hears his voice, she get's excited. I'm sure that soon they will be at odds with each other, fighting over who knows what, but for now I'm going to enjoy them as they are now.

I often try to distinguish whether my emotions are preemie or parent related. Did anyone have this experience with their second child? I'd love to hear your story. I promise I won't judge :)

15 Month Update!

Obviously, we've had many, many, many visits to the Peditrician's office since Vanessa came home just less than 1 year ago. Most of these visits are ok, but ultimately result in a conversation about Vanessa's weight gain (or lack there of). This has been one of the most stressful things for me since discharge and maybe even before that. The thing that I've had such a hard time with is that with my Lactation Education/Training, I was taught to look at the baby. I know what a failure to thrive baby looks like, and that has never been Vanessa. So, all along I've struggled when we've had to have a discussion about her weight, because to me if she wasn't meeting milestones and was regressing, then yeah, I could justify that maybe her intake would be impacting that. But when I look at Vanessa and see her doing things that many, many, many former 25 weekers never do, I have a very hard time critcising her weight gain.

That being said, I've seen my Pediatrician since we moved out to Arizona. He's been seeing Travis since Travis was 6 months old and I love his no nonsense attitude. He doesn't get overly excited about things, so the fact that we was talking to me so much about weight gain made it clear to me that this was important even with Vanessa's apparent developmental gains. So since July, Henry and I have been doing everything we can to up her caloric/fat intake. I researched the highest calorie fruits and veggies and made sure those were what she was primarily eating. Of course, we had some bumps along the way. Vanessa got RSV and pretty much didn't eat for a week. That sucked. Then following the RSV she got 3 ear infections. That sucked too. Sick babies don't care to eat and I can't blame them, because eating is not a priority for me when I'm sick either.

So by the time Vanessa's 1 year appointment came up in September, it's not very surprising that she was a tiny 13.8 lbs. Ugh. The doctor said to put her on toddler formula because it's higher in calories than whole milk. I'll say this is probably one of the few times I didn't listen and took a risk. Everything I read about toddler formula was that it was very sweet, which worried me that I wouldn't ever get her to drink anything that wasn't sweet. So I put her on whole milk and kept up our high calorie fruit/veggie diet. I'm proud to say that on Tuesday, she weighed a whopping 18 lbs! She gained 5 lbs since September! We are still sticking with her diet, although we've gotten a little bit less stringent on it as she is loving table foods which is nearly impossible to track her intake with that. But, she can't be eating purees for the rest of her life, so she needs to explore and I'm fine with that.



This is a full term infant growth chart. What the doctor looks at is to see if a) she's following the curve and b) if she's getting close to being on the curve. As you can see, she's getting there!

Ok, so she's still in the 0%ile for her weight... Who cares!



Yummy Pasta!

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