Welcome... and a few little hints.

[Heart Mommy]

I want to tell all the new families WELCOME... I am sure that you are in that unsure crazy feeling right now. What will all of this be like, how will we cope, what is the best way to feel. Some moments are so overwhelming. Sorry that that seems that way. I remember all of those feelings. Being pregnant doesn't help that either, with emotions at the very surface. That is for the daddies too... Even though the mommies carry the child, the daddies do more internal worry. Will my wife, child, other children, house, job, world be okay?

It is an incredible thing to have this child. It is so hard sometimes and so wonderful another. I became more humble and strengthend by those who were willing to help, also by faith and hope.

So my post is to encourage you!!!! You are going to rock this Heart Baby thing... We are here to help you, try and answer questions, and we are here to listen to you vent about the frustrations that are out of your control. Your child will become one of your heroes as they fight for their little lives. You will walk with angels and consider those who lovingly care for your child angels on earth.

I know that you are already working with the hospital. There are teams to help you with every aspect of your childs/families care. The hardest part is finding these people. So because I was prediagnosed as well here are a few things I did, and few things I wish I had done.

Things I did-

1. Got secondary insurance with Colonial life. Amazing!!!!!! Do it if you can.
2. Got preggers pictures done. (let me tell you I was huge)
3. freezer dinners-many contibuted by loving ward sisters and neighbors who wanted to help... It was soooo helpful. I have a few good recipes of things that taste good last minute.
4. went on a tour of both hospitals. Found the route from the U to PCMC
This was very important as it helped me find the bank in the hospital, the cafe's in both hospitals. Helped me know the parent resource center, the laundry facilities, there is a gym you can walk to to swim and burn off some stress, I knew where the waiting areas were for surgery, computers I can use(all three locations) Camera's I can use in a pinch, programs that can help financially......
5. I spent a lot of time writing down a time line to help me understand what I thought would be a short history of my child.
6. Checked into funeral arrangments (DON"T DO THIS) It helped me cope, but it worried me too, I don't think it is healthy. LOL
7. planned and wrote a schedule/ letter to my little girl to help her understand (2 years at the time Alex was born)
8. Talked to everyone I could about my childs diagnosis who had been there.
9. studied the heart so I would know what the doctors were talking about, and so I could help make good, educated decisions. Plus, I knew what we were up against.
10-Began the conversations that would eventually lead me to our insurance counselor.
11-looked into early intervension and began as soon as Gator was home from the hospital. I can't say enough about these programs. They helped with feeding, sleeping, wellness, strength training.. Ect.

What I wish I did-
1.Got even more supplemental insurance, or understood ours better, it turns out I missed out on two different pay outs of 2000.00 dang it.
2.Spent more time helping my daughter to understand. I have more than made up for it.. or try to.
3.Let people help when they offered. It was so hard to let family and friends in on my very private emotions. I wish I could have seen that they were struggling with all of it too. My mom worried herself sick... Cause she worried about "her" baby and the grandbaby and the baby in law and all the other grand babies and her hubby and the aunts and uncles... And.... and... and..... If you can think of something, a job, if you will that you know that people can do.. Let them... I finally figured out that I need to give my mom the calling tree job... I call her when I can't update the blog and everyone calls her to find things out. It is her JOB... She takes is very seriously..LOL.. But it makes her feel like she is doing something tangible.
4.Write more down. I am already starting to forget how all that part feels. I tried to "spare" people. If that is the case with you, write it down in a private journal. Write how you really feel, I really felt like i needed to put on a brave face.. I think sometimes I believed myself...Hahaha.
5.Take time to be with your spouse. You are both different and this is an experiance that will be very hard on you both. It strengthened us in a way I can't convey to you. But, it also pushed us to our very limits. When there is down time, when all of your energy isn't in survival mode, remember that you still need to do the things that help to work on you two. Being married is hard without this kind of stress... Any other heart family will tell you it is hard. But, don't forget that it was you two that created this sweet little bundle. (my husband ROCKS)
6.Take more moments to enjoy the fact that life right now is special too. It is going to do a 180 and find little ways to enjoy all the moments you have...
7. wished someone told me about home health... What a great program, you learn about when you get home.

K- are you feeling overwhelmed yet? I thought so. These are just My thoughts... You don't have to take any of it...
Plus I would like to see a few of the other prediagnosers give more hints...

I know you will be awesome Heart families...

We are glad to add you to our heart family...

Brynn Homer

We are out in West Jordan, Ut if you would like to get together for a lunch/dinner, to see an older heart baby... If you are in Idaho, I love the Hardmans and I bet they would love to show of their little guy. Or if you have questions you can email me at homerz218@yahoo.com

[JoeyG]

Oh Brynn, this is what I was about to ask as I logged in today. We are about a month and 1/2 away from our Heart Baby's arrival, and I'm just not sure what kind of "prep work" I should be doing. The Cardiologist told us there's really nothing we need to do to prep or ready our house, but that's only one part of this whole thing.

And now that we're finding we can't really plan when our families fly in to help us (our families span from AZ to KY to GA -- we're the lone ski bums of the group), it's added another dynamic to the situation. Fortunately, we have fantastic neighbors who've offered to help with our 2yr old, but I've also heard PCMC has some day care alternatives too.

I wonder if you could elaborate on a couple of items from your list, and I also have a couple questions too:

1. I'm going to get a blog started, but I'm a little torn as to the detail that I should and shouldn't include in it. I mean, I'm not one to keep diaries; part of me wants one main blog ...listing everything, the medical updates, the range of emotions, etc. But, I don't know if that's really appropriate for the fam and friends or not?

2. Can you elaborate on the "early interventions" and home health programs-- we haven't heard anything about that through the hospital.

3. On the Supplemental Insurance, we've been told by the Rep the baby's 1st surgery won't be covered (something about a 28 day waiting period), but I'm not seeing that in any of their documentation--nothing indicates a waiting period for newborns. Would you suggest submitting everything that comes our way to them ...just to see if they'll pay or not?

4. Thank you for the reminder about TLC for the marriage. I've been amazed with how this whole this has brought us closer, but I do worry about the incredible stress that we haven't seen yet ...when the survival mode starts.

5. Do you have any suggestions for helping a 2yr old understand all this? We think she understands a baby sister is coming into the family, but I don't think she understands the baby is sick. The PICU nurse said they'd probably let Cate meet her baby sis before the surgery -- I hope that helps, but do you have any other suggestions?

If you don't want to post the responses here, please feel free to email me at joeyg2007@yahoo.com.

I truly thank you for putting this "welcome" letter out there for us. Now that we're getting over the holiday hump, the range of emotions are getting a bit more raw, especially the fear. And I've never been a "fly by the seat of my pants" kind of girl ...but I feel this baby is forcing me into that. I have a BS in Accounting, I am the epitome of a planner, yes, even a control freak (ask my hubby), and she's teaching me that not everything can be planned. I really really hate this. Thank you for giving me something, anything to help prepare for this upcoming roller coaster.

Sincerely,

[Lisa Owens]

Very well done Brynn!!

[Carinne]

We are currently exploring our supplemental insurance options. Right now we are looking at Aflac and United American- there are lots of different plans even within these companies, so talk to a good agent. Mine rocks, he came to our house in Sandy from Provo to go over everything with us. I think we are going to go with United American; Aflac does not cover anything for the first 28 days for a newborn, United American does not have that exemption. Also, I think Aflac has a clause where they won't cover conditions diagnosed within the first 30 days. We should be getting a payout of about $5400 after our baby's first surgery, $4400 after you take into account the premiums we will pay. And that is if we can wait until baby is 6 months old for the first surgery. (10 months of premium payments). So far it's the best plan we've found.

[Heart Mommy]

Um okay, here are a few of my oppinions.

1-I wish I had written more info on our blog. I don't think you have to post everything, you can leave it in your archive and not post it. but i wish i had it all in one spot. You will change lives by your honesty and fight. It is important for friends and family to understand the deep emotions, seriousness, and hope in the situation. I am not saying that you must, I am saying I wish I had done more. When you are in the situation, you can only do and write what you can comprehend and cope with..

2-Early intervention-kids on the move- and home health are these incredible programs. The type of program that your baby will be involved in are dependant on your ability to have them offered to you. Meaning you must make phone calls and set up schedules... But they are wonderful and soooo helpful, Alex was seen by a home health nurse that saved his life... We started EI as soon as he got home from the hospital. Our Nurse Suzanne helped get Alex strong and helped us VERY early with eating. Now all heart babies have issues but I have had my heart put to ease so many times by Judy that I could hug her guts right outta her. So you can start to get your ideas organized and numbers in order before the baby gets here. There is some very fun things too... Like, Songs of Love. It is a personal song written just for your child. There is a program called Hope Kids, this involves the whole family not just the heart baby, and Make a Wish too....

3- Supplemental insurance is a life saver. Ours covers a time not a proceedure. So because we had Alex in the hospital and Myself then we each got a payout. Then each time after where he stayed for more than 18 hours for a different reason we got another payout. . We have Colonial Life.

4-Your other love- Home babies have it just as rough as hospital babies, but in a different way. They are shuttled around, their schedule is ever changing and they have a new sibling to top it all off.... BUT, our Ryleigh thinks that this is how babies come into the world. She doesn't know any different. She thinks they have to stay there to FINISH. They have a sibs class that really helped but just talking to her about things so she knows what to expect as much as we do was important to our family. I do however, know of a family that chose not to bring their home babies to the hospital, or because it is a yucky time of year they were not allowed. That means the family had to make a very special effort to make the home time really important. Don't worry if they spend more time in front of the T.V. or don't worry if potty training takes a back seat, and really don't worry if you have temper tantrams, we had all of those things. They don't last forever, or very long. They can't figure out why things have changed so drastically....

I hope this helps a little... Good luck,

Brynn

[SBAimee]

I have a few additions to Brynn's list of suggetions.

1 - If you don't have an RV, or don't live far enough away to quialify for the Ronald McDonald House, or if you can afford it, get a room at the University Guest House. They have special rates for people with kids at PCMC, and it is SO nice to have a quiet, clean place to sleep that is literally 1 minute away. You just gave birth. You do not want to recover sleeping in the smelly waiting room. It's also a great way for family and friends to help out when they are feeling helpless as they can help pay for the room. We had family and friends chip in and cover hotel for our entire first hospital stay. SO worth it.

2 - Don't over plan on things to keep you busy. I thought I would get bored sitting in the hospital day in and day out for weeks so I packed a million things to do. Bring a couple of books and some crossword puzzles to work on while you are in the pumping room, but you will be surprised how quickly the day passes and how much is going on while you are in the PICU.

3 - Speaking of pumping, bring a small bag or backpack if you do plan to breast pump. It makes it easier to lug your supplies back and forth to the pumping room every three hours.

4 - Before you leave the hospital, make sure the nurses have let you have plenty of practice giving meds and feedings. If you haven't done it very many times, it can be completely overwhelming when you get home until you get it figured out. I also recommed putting together a schedule of when to give meds and how much with a place to write down feeds as well. That way you can just check it off when you're done and not panic wondering when you gave their last dose.

5 - For those with kids on aspirin, invest in good quality aspirin. Bayer dissolves so much better than the cheap stuff I bought 3 bottles of. You also need a pill cutter which you can purchase in any pharmacy section. I didn't learn about these two things until my son was 6 months old. Knowing would have saved me so much hassle.

6 - If your child comes home on a feeding tube, stay in touch with the nutritionist. They send you some with a schedule of feeding amounts, how often you should feed them, a recipe to get the right number of calories, etc. A month later your kid has grown, but no one ever told you when to start feeding them more or trying to reduce the number of added calories. The nurtritionist can help.

7 - I'm with Brynn - start a blog. It saves you from making a million phone calls, helps all of us to know and love and pray for your little one, and a year later you can turn it into a book and it's a treasure. Sharing your story also helps others, just as you have been helped by reading the stories of those who have come before you.

[Chrissie]

You summed it up Brynn! LOL


You guys pretty much said everything I wished I would of known. We staying in the RV the 1st round (3 weeks) and at the guest house the 2nd round (6 days) have no clue what we will do with #3. Time really does go by fast being down there, just remember to take care of yourself!!! The nurse told me think of it as we have the most expensive babysitter out there. Oh and make time for your spouse, the time you spend pumping and eating and everything else you kind of forget each other. Yes you are in the same room looking at each other, but have so much going on in your own head you , well I did forget about the hubs :( Let yourself get better! You just gave birth for hecks sakes. I forgot about that part and got myself put back into the hospital. So I couldn't spend time with Kylie. Rest, drink lots of water and LAUGH a little it really is a stressful time, but you need to relax a little.


Talk to people, you are all there for the same reason, a sick baby. When Kylie had her norwood I was so scared and confused and didn't really want to talk (wish I would have) but with her glenn things were better and I felt more comfortable. I actually met a cute couple who had that "overwhelmed" look only to find out their daughter was just born with HLHS and just had her Norwood, It was so nice to talk to them and let them know they are not alone and them being able to see Kylie post glenn helped also.

Don't be afaid to ask tons of questions. Make sure you know exactally what is going on with your little one. Being there for your 1st time is scary, I felt like Kylie wasn't my baby but the hospitals baby and I wouldn't get to call her mine untill we brought her home. I was so scared to even touch her. Thats not true they are yours!!! Yes the nurses make you feel that way, but ask to help with things you and they feel comfortable with. It makes it so much easier when you come home.

One thing I wish I did was allow more visitors! I was so stubborn and scared of Kylie getting sick we didn't let anyone come see her except gpa's and gma's I let my boys see her once becuase I felt it was too much for them to take in. I wish I could change that, it gets lonely being down there and if people are willing to drive to see you let them. Don't feel bad leaving either we didn't leave Kylie side for the whole 3 weeks she was there, if I would have known, I would of lived more LOL gone out and saw SLC knowing she had the best care and was stable we should of left more. Wow I could go on forever............these are just things I wish I would of done. GOOD LUCK to all of you! Know you are in our prayers daily. My cute boys always say "please bless all the other heart babies"

Lots of love,
Chrissie
Mommy to Landen 8 HH Cooper 6 HH Kylie 16months HLHS post glenn


Oh and don't be too STUBBORN to accept the help! It was so hard for me to finally break down and admit I need help. I can't do this alone.