03 September 2010

You've been there, done that, and have the t-shirt

CHD Awareness shirt from Zazzle.com

My fellow heart-moms, I have to say: you are a lifeline for me right now!! You've been there, done that, and have the t-shirt (and you're still going there!).

As I was reviewing comments from the past few posts, I got a lot of information that neither my husband nor I had heard before: about government and other assistance programs, about ways we can get help to make it through this crazy time.

And then I had the thought:
What else do you know that might help?

I'm not just talking about ways to get financial assistance, though if you know of ways above and beyond what has already been suggested (e.g., the SSI form for a child's disability), then I want to hear it. But I'm wondering what else you've gained in your experience that might be helpful for us to know.

I don't want to limit the scope of what is offered, but I'm thinking about anything in the way of the following: NICU survival tips, asking the right questions of your doctors and nurses, things that might have worried you at first that may have turned out not to be a big deal (or vice versa: things that seemed like no biggie but turned out to be important), things you wish you would have known and/or taken advantage of while your child was there. Anything like that. I know there is a wealth and variety of experience, so have at it.

What should we, or do you want us, to know?


Kristy said...

Hi! My name is Kristy and I have a 10 month old daughter with TOF and my hubby has TOF as well. You already know of Ewan's condition before his birth which puts you a huge step ahead of where I was. I wasn't able to prepare for what was coming and I am thrilled to see that you are taking full advantage of this time to learn everything you can!

The biggest thing I learned while Kenz was in the CICU and NICU is not to panic when one of the alarms on the monitor goes off. She set those things off more times then I could count and it was always nothing to worry about.

My next piece of advice would be to take notes when talking to the doctors. You are going to be completely overwhelmed with info and probably feel like you are in a different world. I wish I had done this myself.

It is so easy to let this whole thing consume you. Remember to take time to catch your breath.

Remember that you are Ewan's biggest advocate. Ask questions and if you feel that something is not right stand firm on it. A mother's instinct is like no other and you will know your baby more than any doctor ever could.

Most importantly, never lose hope. There has been a time in every CHD parent's journey where the felt completely helpless and alone, that is normal. My hubby is 29 and living with TOF and our baby girl is doing excellent. Remember there are many of us fighting this battle and you are never alone. Take advantage of the support that this wonderful community will offer you.

Wishing you and Ewan the very best!

Nicole Wardell said...

Hey there!! It's getting so close! I can't wait to see little Ewan in the flesh. I have a couple pieces of advice...and some of them go along with what Kristy said (I love Kristy and her family by the way!!)

1. Have a basket or sack of food on hand for you and your hubby in the NICU. Stock it with fruit, whole grain crackers, carrots, whatever snack foods you like. You will most definitely miss meals, forget to eat, be too busy or worried or confused to eat. BUT, if you have those things you can at least keep the fuel you need.

2. TAKE notes. You get to see your doctor once or twice a day for a few minutes on most days. It is so overwhelming you won't remember everything you wanted to ask. Keep a notepad with you all the time. When something happens that you don't understand, write it down. If you think of a question at 3:00 AM while dozing in a rocker...write it down. Then, when the doc comes you will be able to ask the questions you want answered.

3. Speak up!! You absolutely do not have to sit back and let others dictate Ewan's care to you. Now, I am not advising being a pain in the rear that no one in the hospital wants to deal with but, you can have a say in his care. Tell your nurses if you want something done. If they don's listen, speak to a charge nurse...if she doesn't listen...speak to your doctor. Make sure your concerns and desires are known. Decide about things like formula fed vs breast milk only before hand and make those wishes known. Speak up for Ewan because you will be the best voice for him.

4. Use things in the NICU that will help Ewan feel happy. Use music for him to listen to (our hospital had little CD players you could use) play lullabies or classical music. Talk talk talk to him...even if he may seem quiet. Touch him often. Rub his little feet, stroke his hair, let him know you are there and with him. Give him a soft blanket or a stuffed animal to feel next to his skin.

5. Lastly...know you can do this. Every heart parent has had the thought, as I am sure you have had already, can I do this? Absolutely! I know you are religious...pray often and you will have moments of startling clarity, you will have heavenly help and guardian angels to comfort and guide you and you will be amazed at how strong you are. Listen to those quiet spiritual whisperings...they always mean something and can help you!!!

Jill said...

these may sound silly, but it's something that i've found helpful along the way.

1. if the hospital doesn't give you one of those obnoxious huge cups with the big plastic straw, get one! I found between nursing, the salty hospital food, and the dry hospital air, I am constantly thirsty.

2. i carry all of my pumping supplies is one of the ugly pink plastic wash tubs that the hospital has. In that i have a wash cloth, bottle brush, liquid dish soap, and all of my pump supplies. When a sink is not available or too small to wash my pump parts, I fill up the tub with water and soap and wash them that way. Then I lay the washcloth in the bottom and let everything air dry. works wonderfully!

3. dress in layers. Some days the hospital is freezing, others is warm!

4. seriously, and I know you and I have both heard it 10,000 times. Take care of you. It was so hard leaving to go to the sleep room that first night after surgery, but I was exhausted, and there was nothing I could do to help Joshua at that point. He was under constant care, and I needed to sleep. There is nothing wrong with making sure you get a good nights sleep so you can be at your most attentive when the doctors come around in the morning.

5. Ask the social worker for meal tickets, nursing mother meals, and for any other help with food they can give you. The cafeteria food is expensive!

6. use your lactation consultants like crazy! they are going to be your best resource for all things breastfeeding. Mine even supplied me with the parts to the pump for free (will be billed to insurance). Those parts are $50 or so, so ask to see the lactation ladies ASAP! Also, see if your insurance company covers the cost of a pump (a good one...) if not, contact WIC and see if they can help you. My WIC office helped me to get the "nipple ripper" which is a great pump! I can "rent" it for a month at a time at no cost.

7. Finally, be pushy. You will be amazed at how well you will know your baby. The nurses shifts change and it can be hectic. Ask the doctors and nurses what everything is and don't feel stupid if you have to ask them the same question 10 times before you completely understand. (I even had to ask how to clean Joshua's pee pee because I've never cared for an uncircumcised one before...hopefully that will be taken care of soon! :o) )If you think something isn't right, tell them. That's how we were so lucky when Joshua crashed. If it weren't for my telling the nurse that Joshua looked blue and pushing her that something wasn't right, his heart would have stopped. You will know what your baby wants and needs, and make sure you are his advocate.

Whew...that was long...you probably already knew most of that. sorry if it was redundant! :o)

Still praying!


Jaymi said...

Hi, my names Jaymi. I have a 5 1/2 year old son, Benjamin who had TGA which was not diagnosed until he was born.

1. I agree completely with Kristy and Nicole- keep a notebook and write down every little question, observation anything that crosses your mind. With the lack of sleep and stress it is so easy to forget.

2. I also kept a journal. I wrote down everything I was thinking and feeling. I also wrote down all the "big" accomplishments- when he opened his eyes, came off the ventilator, finally ate by mouth. I wrote him letters. It was very cathartic and it is so meaningful to look back on today.

3. We also played music. It was calming to me and i hope to him as well. I was given the CD miracles by Celine Dion as a gift. My son still falls asleep to it every night! He also has a small stuffed puppy that he sleeps with that has been with him since his surgery- we call it his watchdog!

4. I know this is a very personal decision, but if you decide to nurse your son, know that there is support. I had nursed my first son and was worry that because Benjamin was not eating I would not be able to do it. The nicu nurses were very supportive, the hospital had pumps that you could use as well as special rooms to pump. They even stored the milk so that when Benjamin was able to have milk(even through a tube) they had my milk to give him.

5. The hospital had a chapel which I found to be a very comforting place just to go and think and pray. It's hard to find a quiet place in a hospital, you may want to check if yours does.

Good luck, I will keep your family in my prayers. It is a scary time, but it will teach you so much about love and life.

Stefenie said...

You got a lot of great advice from the above heart moms. Not sure what I can add on top of all of that. My suggestion would be to make contact with the hospital social worker on day one. Make her your new BFF. Our hospital helped to provide gift cards to help with food in the hospital, also we were able to get parking passes since parking in our hospital ramps are NOT free. They are owned but the university not the hospital...which gets expensive. Check and see if local sandwich shops deliver to the hospital entrance. We ordered sandwiches from a local sandwich shop and they had free delivery. It gets pretty old eating in the hospital all the time even though ours has like five different places.

Like they mentioned above take LOTS of notes. Anytime during the day if you have any questions or if something is bothering you write it down and that way you are ready when the doctor's round. We had a notebook right by Logan's bed that we used.

Also, don't let the alarm freak you out. I know it is hard not too because panic mode sets in but they do go off a lot. You can usually look at your baby and tell if there is a problem. HOWEVER with that being said DO NOT be afraid EVER to call a nurse or doctor into your room. DO NOT be afraid to ask them ANYTHING. It is part of their job to make sure that you understand what is going on with your child. Don't let a white coat intimidate you at all.

Anonymous said...

Wow where to start?

First take care of YOU. I really really really can not say this enough. If you are not 100% how Ewan WILL pick up on it.

YOU and your husband will be Ewan's best advocate. Remember Ewan is the doctor's patient but he is YOUR son. Question anything you don't understand

Write down any questions. If you don't you will forget and then be upset. Also remember that you will be dealing with several doctors. Many times you will get conflicting answers. Write down who told you what so you can refer back to it.

Pleast DO NOT panic the first time you get a packet - and I do not mean one or two in a envelope - I mean a big packet of insurance EOB's. It can be overwhelming. Try to organize these on a computer spreadsheet. It made a world of difference to me and my sanity.

Do please check into the whole SSI/medicaid issue. I know this can be hard - I was humiliated when I signed the application and even more so when I handed her card over the first time. Trust me - you will get over it and quickly too! Our insurance topped out at 1 million. We were in the hospital for a little over 2 months the first time. You do the math. Every time her intesivist walked past the crib it cost $1800.00 Yes, you read that right.

Do not lose your sense of humor. You will laugh, you will cry, you will scream, you will be speechless and you will shake your fist at God may times over. You can even find yourself down on your knees in the hospital chapel praying like you have never prayed before.

Take advantage of all the things in Ewan's cart when you leave. By that I mean any diapers they have in there, any formula that was charged to Ewan, any syringes (you will need those for meds at home), any of those little 4x4 cotton squares - you will be amazed at what you can use those for at home, take EBERYTHING. Your insurance company has already been charged!

The best tip I ever received on this journey was regarding meds. We came home on a laundry list of medications and they were of course given at all hours of the day. Another heart mom told me: get baggies. label them what time such as am or pm. Draw up the meds ahead of time. Have someone else DOUBLE CHECK THEM (this is very impt because when you are up at 2am giving a med you will be VERY tired and have asleep!) put them in the fridge in a little plastic box. That way you only have to grab the bag that you need and verify that. Not verify 12 different medications. And yes, we came home on 12.

Remember this whole road that you will walk is a dance. I call it the Heart Shuffle. There will be days you dance backwards (and in heels no less!) but remember that you ARE going forward.

Understand that this is hard on ANY marriage. Let me say that again - ANY MARRIAGE. Even the solid as a rock ones. You will take your frustrations out on each other. Just remember you are both fighting the same "enemy" and it is NOT each other. It will be hard - but take a "date hour" (that was all I could stand to be away from the hospital at a time) each day if possible.

Hospital air can be hard on your eyes especially if you wear contacts like I do. Take lubricating eye drops with you.

Touch Ewan as much as possible even if you can not hold him. We even put up a black/white picture of us and our older son in her little crib near her head so she could focus on that.

Shannon Egan

Anonymous said...

Start sleeping with a receiving blanket now. Don't wash it. Make sure the hospital puts it in with Ewan so he can smell your scent. McKenzie would inch around looking for hers. She calmed down anytime we put it next to her.

Pray. Just don't be suprised if your prayers are answered - just not always in the way you think they should be. Remember Ewan's story has already been written. You are along for the ride.

Believe in miracles. They happen every single day. EVERY. SINGLE. DAY.

Cherish every moment of this journey. I would not have asked for a different path. Except for the physical pain my daughter has obviously been through I would not have changed this road for another. McKenzie has taught me with her half of a broken heart how to love with my whole one. And that is the lesson I needed to learn from this whole AMAZING journey we started over 3 years ago.

Remember you are not alone!

Be Blessed -

Shannon Egan

Katie said...

Hi Kirsten- great chatting with you the other day...hopefully I provided you with some comfort and not stress. As a fellow Seattle Children's cardiac mom, I will give you som advice on your new home soon...
1) The NICU/CICU didn't let us eat in there when we were there (rules may have changed tough) but you could bring something in to drink. I dito the comment on being thirsty! Whew!
2) the pump rooms are great but you can also ask for a "bedside" pump in Ewan's room. I was able to get my hands on one and then didn't have to share. I'm stingy like that. It's the yellow Symphony Medella pump (doesn't kill like the blue Medella) and is super quick! I would recommend talking to a lactation nurse as well at Children's.
3) Optimum Wellness is the company I went through for the SAME breastpump that I used at Children's. With insurance, I think I paid $10-15 a month for the use of it. I loved that pump (have used others in the past and the Symphony is the BEST!)
3) Pack little socks, hats, stuffed animals, blankets, for Ewan to wear and you can decorate his little space w/ pics of you and your hubby, family, etc. and the nurses even pulled out a cart of supplies for me to make Maddie a cute little sign to hang above her crib/warmer bed.
4) Yes, write down everything...questions you have, ideas, thoughts, doc's comments & answers to your questions, etc. You will be able to be a part of rounds every morning and I'd suggest you or your husband always being there for that. Ask the nurse what time (seems like around 8-9am in CICU and 10am on the floor). You could tape record them as well??? There is always a lot of info. discussed and the fellows are always there to "learn" so sometimes rounding on your child can be a 10 minute discussion! You'll learn lots in rounds.
5) If you're nursing or pumping, you will get a free meal voucher to the cafeteria each meal. Use it! It was around $10 so we'd max ours out each time, I'd load up for Bryan too, even just snacks for later :)
6) Cell phone reception stinks at Children's...you've probably already learned this. I basically only get reception outdoors. You can have calls come into the NICU, CICU and the floor. In the NICU and CICU, the receptionist will call your room and ask if you want a call from "so and so". It's nice, like your own personal secretary...although the nurses probably don't like too many calls coming in and usually we shared with another baby so I hated to gab on the phone while another family was listening in.
7) Once you're on the floor, they have a menu book of places that deliver food to the hospital. By that time, you're usually sick of the cafeteria.
8) Take comfy clothes- you'll find yourself sitting/laying around lots, especially in the CICU/NICU.
9) Remember that Ewan is YOUR BABY first. I recall feeling like Maddie's second mom sometime (her nurse being #1) so ask to get in there to change diapers, suction him, hold him, etc. They are so used to doing it that I think they forget to ask us/or it takes a little more time explaining "how" they like it done, etc. This is your time to bond, even if in the hospital so be "hands on" :) Take some books, music, etc. for Ewan to listen to as well. You can ask for mobiles, stimulation toys for him.
10) And as another mom mentioned, the chapel at Children's is at the Giraffe Entrance and was comforting to me as well. I would go in there to pray and have some peace/quiet. The church services were helpful as well. They welcome all faiths and pastors from many denominations come to speak and provide the service each Sunday.

Know that we're here for you and are cheering you on! YOU CAN DO THIS and you're already an awesome heart mama...preparing so well. You will do just great. Hugs to you!

Tara said...

Great advice above! I found it comforting while I was recovering from birth (alone in the room) to have a stuffed animal to hold/hug/snuggle. Since I didn't have my baby to hold, I found my motherly instincts were craving to hold and snuggle. After I was discharged, the stuffed animal (I had a monkey) had my smell on it, so I put it in Liam's hospital crib.

Also, a note for handling insurance and bills...don't stress over them AT ALL. I know some wont agree with me, but I waited a good 3 months before I even started sorting through the mail. A lot of the "bills" and EOB's you will get may not be right anyways at first, and I found that if you waited for a month or so for everything to be filed, it made it much easier to match things up and start a plan for payments. Also be cautious about what you actually OWE. The EOB should be the final say in what you actually pay, not the bill. I found many occassions where we were billed WAY more than we should have been. Medical provider are also very willing to work with you on payments, so don't feel like you have to pay it all at once. Not sure how insurance works with the disability income, but I have heard that it can cover ALL your out of pocket expenses...I still need to file for Liam.

Oh, and ask for a copy of the discharge file for Ewan before you go home. Our file was quite lengthy, but it listed every test, doctor, baseline stats, EVERY medical thing you ever wanted to know that happened to him. It was very useful when meeting with the Pedi the 1st time.

You can do this =) Stay strong and be encouraged you are not alone =) We are all here praying for you and cheering for Ewan!

Anonymous said...

I agree with the above poster on getting the medical records. We set up a sile that I carry EVERYWHERE. Never know when an emergency is gonna happen so I always have it in the car with me to refer back to for dates of surgeries and meds we were on.

Also, I went back and was reading some journals I kept during my pregnancy and our hospital stay. I was on complete hospital bed rest for the last 6 weeks of my pregnancy and was 2 hours away from home and my (at the time) not yet 2 year old son - there is 18 months between my kids. I was feeling just about as low as I could get - not knowing if my daughter would live, not knowing how we were going to afford any of this, not knowing if we were going to be planning a funeral within days of her birth. I came across this quote and it just gave me hope. "Do not let the WHAT IFS take away from the WHAT IS." That one quote changed my whole outlook that day. I no longer was depressed that I was bedridden. I got to enjoy just laying there and concentrating on her kicks, turns, hickups. I was lucky that I had a ultrasound every day that I was in the hospital. So for the last 6 weeks of being pregnant I saw her every day. How special that was. Enjoy these last few weeks of your pregnancy. Savor every moment that your body sustains your son's life. Your about to embark on the wildest ride of all - Parenthood! Congratulations.

Shannon Egan

Anonymous said...

I know it's been said already but don't flip out over the alarms! Emmett set them off constantly (every few minutes) and 99% of the time it was a loose lead. The other 1% was de-satting or high sats from screaming, etc. We never had a real emergency, even in his most critical days.

Don't be shy about calling the NICU when you aren't there. We had to be home with Dade all day but in the evening we went to the NICU to spend time with Emmett. During the day I called several times to see how he was, to see how his feed went, etc. almost all of the nurses were super sweet and supportive. Occasionally you'll get a crotchety one, but be firm and let her know it's not going to stop so she should just get used to the calls.

When you are able to hold him, skin on skin contact is very important. I don't know how things will work with TOF, but Emmett being a preemie (31 weeks) I wasn't allowed to even touch him for days, and it was about a week after he was born before I could hold him. I couldn't get in a position for skin on skin until he was about 3 weeks old...but as soon as you can, DO IT!

NOTES NOTES NOTES! Between Emmett's hernia, being a preemie and then his heart troubles (diagnosed at 4 months) there were so many medical terms flying around that I didn't know. Stop the doctor and ask him to spell it, give you more detail, etc. so you can do some additional research. If you think of questions, write them down and ask later. I promise, you'll be too tired/hungry/stressed to think of all of them when you see the doctor.

I found prayer to be a big help. In my moments of despair, I had nowhere else to go. No one else to plead with but God. I can tell you, anger has been my constant companion since I had Dade. From the moment he was born, we were fighting the CHD battle, then Emmett came 2 years later and was a preemie. He had a hernia 2 weeks after he was discharged from the NICU. After surgery for that he was good for about 2 months then was diagnosed with 2 heart defects as well as hypertension. I felt like it wasn't fair that I had so many trials that I couldn't handle. I still have my bad days, but the prayer has helped me not be so angry and bitter.

Join a local support group! I've met some of my best friends through our support group and it's been an amazing help with questions, advice, and even someone to vent to who won't get upset with you because they KNOW what it's like.

All of our experiences are different. My kids' problems aren't nearly as delicate as yours, or other kids who need a transplant, but to a parent...the pain is all the same. It all hurts. Some have bigger trials, but all of us know what it's like to be a CHD parent.