Intro/Questions

[randall]

Hello Everyone!

Our son was just diagnosed with DORV, VSD, and Pulmonary Stenosis. He's not due until October 20th of this year. My wife, Janalee, and I are glad to see this support group. It will be nice to interact with many of you that have gone through what we are about to go through with our little guy. Our blog is at: http://randalljanaleefamily.blogspot.com. What tips/advice would you give us as we prepare to deliver?

Thanks!

[cmooredavis]

I hope I can offer some suggestions that might help you out. On the Intermountain Healing Hearts web site Brynn Homer (Alex's mom) has posted some information of what she found helpful to know/be aware of. You can find that at: http://intermountainhealinghearts.org/hospitalstay.html

This might duplicate some of what she mentioned but things I thought were good to know:

Bring things to do to keep you busy. Somethings that were awesome to have later was a journal (or laptop), some puzzle books, knitting etc. Updating your blog will also be helpful to get the word out on what is going on without tons of people calling to ask.

Take lots of photos and video clips (even right after surgery). They might be hard to look at but you can really see the daily improvement looking back. Also I wish we would have taken one with Dr. Kouretas (the surgeon) and Jacob.

During surgery, the surgical waiting room can be REALLY nerve racking/emotionally difficult/busy and the parents there are waiting for "simple" surgeries (like ear tubes) that take like 15 minutes as well as life saving operations like open heart surgery. It can be pretty rough watching families come and go as you are sitting there all day (we were there over 7 hours waiting). Some things that helped us during the surgery were to sit in the smaller area of the waiting room to the right (less people and noise) and try and keep busy (good luck with that :).

Bring flip-flops for the shower. We also kept a number of days worth of clothes in a bag in our car, just in case we needed to stay by Jacob's side longer that we had thought.

Take breaks to get out of the PICU. For me pumping milk was a great chance to make phone calls and take a breather from all the beeping machines. Also taking time to eat regular meals was a good chance to talk with my husband and figure things out.

Make a plan for your schedule. My husband had to return to work a few days after Jacob's surgery. We also have two older girls at home. It was hard feeling torn between being at the hospital as much as possible and being with our girls. When we set up a schedule our children knew when to expect to see us and things went much smoother.

Once our baby was stable the nurses encouraged us to sleep at home. This was very helpful as I was recovering from giving birth (I had been released from the hospital 7 hours after he was born to go to Primary's with him). It gave us a chance to see our girls more and get quality sleep.* I called the nurses whenever I got up to pump and right before going to bed and again as soon as I woke up. They will call you if things with your baby change.

Before surgery/delivery, take a tour of the PICU. We were able to see a little girl with chest tubes in and it helped better prepare us for how Jacob would look, but remember nothing really will prepare you for seeing your child for the first time.

Ask lots of questions and learn as much as you can. Remember you are part of the medical team for your child. Make sure you understand why they want to do something and you ask enough questions that you feel comfortable with the coarse they are taking. You are allowed to read your child's medical file. I would read through the daily nurses notes (especially when I first got there in the morning) so I know what had happened while I was gone. Ask questions as to how to decipher the notes. That way I felt like I knew what was going on with his progress. If you are having difficulty with someone (nurse/doctor) talk to the head nurse or another doctor. You can request that a nurse not be scheduled to care for your child again. Also if you love a nurse you can request that they be with your child for any of their scheduled shifts (talk to the charge nurse).

Support from family, neighbors and friends is priceless. We had family here to watch our girls, had neighbors bring in meals, mow our lawn, and do so many little things for us. You will feel overwhelmed with the outpouring of love and prayers offered in your family's behalf.

This baby was sent to your family because you can handle all this medical craziness! I really believe that these special babies are sent to families that can be their advocates and really help them. God knows what he is doing and what we are capable of. You guys will do great figuring out how to best meet the needs of your entire family.

As a side note it is interesting to see the genetics behind these heart issues. My sister's son has a heart defect related to my son's (my Jacob has Transposition (TGA) and my nephew has Tetralogy of Fellot). If you feel comfortable participate in genetic studies that they will offer to do at the hospital so maybe someone can figure out the why's behind these defects.

As far as the bills go, keep them organized in a binder or in one area. I matched up the medical bill to the insurance statements. I also kept a spreadsheet of all the providers billed amounts and what the insurance paid and what we paid. I was amazed at the number of errors I caught (being double billed, or things being denied that should have been covered). Although we reached our yearly out of pocket max when Jacob was a few hours old, insurance still denied us for random things that I had to have them look at again or appeal. Also ask to have an insurance case manager assigned to you. The insurance case manager is an employee of the insurance company (ours was also a RN) but we found ours very helpful to explain things and have one person to contact about things (FYI we have IHC- Select Health insurance). Know that it will take many months to get all the bills and that you will get bills from people you have never seen or heard of. The amount of the bills will also amaze you (Jacob was hospitalized and his bills totaled almost $200,000, he is worth every penny!).

Brynn has also mentioned getting a supplemental health insurance. I know that Aflac offers an Intensive Care plan that pays out when your child (or whoever is covered) is admitted to the NICU or PICU (where your child will be after birth and surgeries). Depending on the policy the pay out is either a one time amount (like $2000) or a per day amount for each day that they are in the Intensive Care Unit (I am not sure the daily amounts but I thought I heard $150-200). You can still buy these plans when you are pregnant because the baby's health is not considered a pre-existing condition until they are born. I know there are other insurance companies that offer plans too. One of the families in our support group said they pay $80 a month for a plan that paid $2000 for each 24 hour hospital admittance (I think she got this before she was pregnant so it paid out for her and the baby delivery and he was admitted a couple of times in between his Norwood and Glen for heart failure issues- so they got a total of like $10,000 in the first 9 months after he was born). Another family mentioned that they had been paid out $57,000 in supplemental insurance from two different policies because they spent almost 3 months in the NICU. Crazy!

Sorry this is so long but I hope it offers some helpful information. Good luck and please let us know if we can do anything for you!

[4Hursties]

I loved the previous post; here are a few things I have to add:

The Parent Resource Center at Primary has a list of hotels with discounted rates during your child's stay in the hospital. We stayed 3 nights at the University Guest House and 2 nights at the University Marriot. That got us one night past the PICU stay after our daughter’s surgery. For us that was the best investment we made, we were always five minutes or less away. My son loved staying there when he came up too. Once in a regular hospital room there was a bed for one adult.

If you have older children, they can go through the surgery prep class for kids. This class really helped my 7 year old; he was not scared at all when he saw his sister. We waited for her to get in a regular room and most of the tubes to be removed before he saw her. Child life specialists will also deliver toys for siblings to the hospital room.

Just say no! The nurse practitioners are wonderful, and they practically run the Cardio-thorasic department and do a great job, but one of them wanted to pull Emma's chest tube without pain medication. I said no and made her wait for the morphine to take effect first. You have that control, use it when you feel you need to. I have faced of many a nurse since Emma's birth, all the time with a smile and calm voice, but insistence that may way is the only way. I was fairly outspoken before, but there is nothing like a heart mom when it comes to being bold.

Call and schedule a consultation with your surgeon prior to the surgery if you can. (Our first surgery was at 6 months so we had some time.) Dr. Kaza was wonderful; he met with us about a week before the surgery and showed us in detail what he was going to do on a 3D model of the heart. We also got a picture of Emma and Dr. Kaza at that time. We also got the remaining material from the patches in Emma's heart for her baby book. I actually just walked up to the Cardio-Thorasic doors one day to make this appointment in person because I was getting a bit of a run-around.

When it comes to pokes for your baby for blood tests, IV's etc. there is an IV Team and a Lab Team. The lab team poked Emma three times once and then called the IV Team. Just skip the lab team all together. When a doctor orders labs or a nurse orders IV's insist on the IV team every time. If there is a vein to be tapped they will find it. These little ones go through enough as it is.

If you need a break but don't want to leave the hospital you can take the sky walk to the University of Utah Hospital, they have a cafeteria with much more options for dinner, and when you are in the PICU, they are going to kick you out twice a day for an hour at a time during shift change, so you might as well check it out.

When you want to scream or cry, do it! You will feel better afterward. I know you now have a lot of information to process, hang in there.

Amy
Emma 8 months - TOF
Triston 7 years - Heart Healthy
littlebearandpeanut.blogspot.com

[randall]

Thanks for all the advice. We have a lot to learn...I will definately need to be more outspoken at the hospital. Supplemental insurance is something I'm going to get.

Thanks again for all your kind words left here and our blog.

[missvampyr]

Hi,

I just read your post about your new baby due in October and wanted to say congradulations. I have to tell you that all of you moms and dads who have these little ones are very blessed to know in advance that your going to have a very special little one.

Today's medical advancements are just amazing to say the least. When I was born 46 yrs ago my parents were concerned about the possibility of having a heart baby, but when I was born the drs. found nothing wrong with my heart so of course my parents were thrilled.

Well that was short lived cause at 6 months old while at a reg. peds check the dr. found I had been born with a complex heart defect. My parents were told to just take me home, love me but also make funeral arrangements cause they didn't expect me to live to see 5 yrs old.

Well needless to say since I am writing this post the drs were wrong. I had my O.H.S. in 1974 at age 11 and the surgeon who did my surgery was on the cutting edge of heart surgery for that time and I was his guinea pig so to speak.

Nowadays surgeons have all the best medicine has to offer at their disposal so your babies are in the very best care.

Anytime I ever meet someone who has a heart baby and they are worried I just reassure them that their little one is going to have the very best care with all these advancements in medicine.

I just wanted to say congrads again to all the new babies to be that are expected and to reassure their momma's and daddy's that in todays medical field your little ones are in very good hands.

One of these days I hope to be able to meet some if not all of you in this group. I don't get to post often but I love to read all about how your babies are all doing and I cry when I learn that there is another heart angel.

So I hope that everyone's little ones are doing really well, getting nice and pink, getting into trouble and enjoying being the adorable babies and kiddos that they all are.

Hugs...Teresa

1st cardiac cath. 1968

2nd cardiac cath. 1974

O.H.S. 1974

HEART BABY SURVIVOR :)

[Ellinger Family]

We were that family who stayed in the NICU for three months, and while we did get paid quite a bit of money, it was because of my little boy's other birth defects besides his heart. He has had 16 surgeries to this point and is 17 months old. He was born with Pierre Robin, cleft palate, GERD, Tetralogy of Fallot, and severe obstructive apnea. He's had jaw surgery, g-tube/nissen surgery, 2 bronchoscopies/laryngoscopies, 2 ear tube surgeries, 1 eye surgery, 5 cleft surgeries, 1 heart cath (the was done in the OR because of who Nathan is), 1 open heart surgery, and 1 tonsilectomony which put him in the PICU longer than his open heart surgery. We bought the insurance before I was pregnant. Our first child was healthy and we had no reason to believe that Nathan was going to be any different. On a sore subject note, we weren't even prediagnosed. There is a clause on most supplemental insurances that the mother has to work at least part time. Since I work full time, the insurance paid out much more to cover the time I had to take off work. The insurances pay out more for surgeries than daily hospital stays. That is why we were given so much. We still have the policies because we know that Nathan isn't done yet either. The policy originally just covered me and because I had a c-section it paid out quite a bit for that too.

AFLAC is easy insurance to get. However, after all of Nathan's hospitalizations I have discovered they are also the most difficult to work with. We also have Assurity Life, but I think that they no longer offer policies in Utah. Assurity offered on our policy $500 a day for an intensive care unit stay for a max of 20 days. It also offered an additional $200 a day benefit for each day of stay in the hospital for longer than 20 days. We were very fortunate to have this insurance since I took almost 6 months off of work last year and have taken off a couple of months this year for my own health and Nathan's.

Marty Ferguson is the insurance agent and I think he is located in Midvale, but I would just google his name and have it look in Salt Lake. I don't know if they can deny you to have insurance or not if you are prediagnosed.

Throughout this whole mess, my husband and I have never felt the financial stress that a lot do and that has made a BIG DIFFERENCE to us. Yes, we still have highs and lows (like last week when Nathan had his T & A and ended up being sent to the PICU for the week because he stopped breathing 20 minutes after the surgery and had to be put back on a ventilator), but we are able to worry about Nathan and not how we are going to pay for this whole mess. We've kept a lot of money in savings because we are pretty sure that for the next 5-10 years we will be reaching our deductible without any problems on our health insurance. If we don't use it, we laugh that we should put it in a 529 educational plan to send Nathan to medical school so he can see what we've had to deal with.

My other suggestion to you is to keep your family and friends close to you. They have been and still are such a great support to us. Learn to roll with the punches and celebrate the small successes because that is what counts. Nathan won't eat orally and now he likes to lick green sour apple suckers. We have clapped at him when he does and now he takes a lick and then claps for himself after because we've made such a big deal about it.

You'll be amazed at yourselves for what you can deal with. If you have any supplemental insurance questions after 17 months I feel like a guru at it. Just send me a message. Also, it seems like Nathan should be much sicker than he is, but he's doing quite well. You are welcome to check out of blog. Its: www.jakestephanieellinger.blogspot.com

Good luck!

[Alli and Kyle Hicken]

Stephanie,

I need to learn more about how you are doing your supplemental health insurance (and everyone else who has this!). We tried to get on a policy with AFLAC before Grant was born and they denied us because we had to have a group policy to get it. Now, Kyle's job offers some supplemental policies, but the ICU policy is not included and we are again stuck. I am not currently working, but does anyone know of a way for a single family to get and ICU policy.... and fast? We go back on August 6th for Grant's Glenn (2nd OHS, 6th total surgery). I would love some ideas!!

Alli Hicken
mom to Grant (HLHS, heterotaxy)

[Ellinger Family]

Alli,

The insurance agents generally get around that by putting you in a "group" policy with a credit union such as Mountain America. They automatically pull from a savings account every month with other members of the credit union so it appears as a group. I think a problem you will run into is that the insurance has to be on the person 10 months in advance (because most people get this for having babies), and also if I hadn't had the policy in force on me before Nathan was born Nathan would not have been covered. They don't want to cover people with heart disease or defects because they are a pretty cost consuming group. However, as a newborn they could not deny me adding Nathan since it was specifically stated in my policy. Also, now that the policy is in force, even if I were to drop the policies and decide in 5 years that we would need them again, they also could not deny Nathan because he was a previously covered individual. (That being said after being through this we'll just keep both of us covered because of what a blessing it has been and you never know when you'll need it).

I probaby would still contact an agent and see. There still might be something out there. Good luck with Grant's upcoming surgery!

[Heart Mommy]

We too have supplimental through Colonial Life... It is just a really super low policy, stating that if anyone in our family is hospitalized for more than 18 hours we recieve 2000.00$ Gator is 2 and we have cashed in six times, you do the math... I would say that if AFLAC isn't helping try Colonial.