Moral and Spiritual Support Before Julian Open Heart Surgery.

Updated on April 28, 2009
N.R. asks from Fort Collins, CO
26 answers

After five Bronchiolitis in 7 months And a swicth of doctors for second opinion on the bronchiolitis (Thank God we swicth just on time),JUlian had finally an ultrasound of his chest and they found he has a heart birth defect that requires fast surgery .Julian is going to have open heart surgery at 8 months old tuesday april 28 th ,after tomorrow at children's in Denver where we were hospitalized for about a week as his last bronchiolitis was really severe and his breathing and heart needed constant monitoring by pediatrics specialists.I am just letting the group know so lots of prayers and special thought can be with him and us on that day .The surgey is schedule at 7.30 am. For those who know me, I have to other children Lauren and Christopher that are with Grandma in Texas so we can deal with the julian's surgery. The reason they went to Texas ,somebody had to watch my kids while i stay in the hospital with Julian and two he has to reaaly careful to not get sick as this will push back surgery.His lungs are still very frail but he is home on oxygene for now until tuesday.I was a stay at home mom to all of them and now i am feeling blue low and sad has part of my hear is broken from missing my children soooooo much .They are just 6 and 31/2 years old. If any of you have any idea on how not to feel so empty and sad when missing your children so much or had a similar experience,please share .I know it was the best choice for Julian's safety and his life but it is just so hard to go through .To me it's even almost worse than the actual surgery. They 've been gone for TWO WEEKS and it is still about two more weeks before i can may be see them .Any ideas,though, prayers,encouragements,whatever will be so welcome by me .Thank you.
N..

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So What Happened?

Sorry for the very late updated but we have been very busy,obviously.Julian is now 17 months old and doing fine.His immune system is not quiet back to 100% yet,so we still have to be very carefull.But expect that he is doing fine and most important is alive.So, it was worth it.

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S.H.

answers from Denver on

I have a two year old that had heart surgery in Denver with we was just over 1 years old. We've know about her condition since before she was born so we've had a little time to process this. I know this may seem very scary but just enjoy the one on one time with your son. The people at children's are great. They will take great care of you. They have a woman who will come out ever hour to update you on the surgery. I know it's hard to just sit in the waiting room while they are doing their thing but go for a walk, get something to eat, they'll give you a pager so you don't lose your mind. I know it's hard being away from your kids. I've never been away from them that long but my other daughter stayed with grandma for the week we were at Children's. Enjoy it while you can. Know that they are in good hands and focus all your energy on Julian going thru the surgery. You won't want your kids to see him with all those wires and chest tubes anyway. If you ever need to talk drop me a line.

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K.L.

answers from Great Falls on

N.,

My thoughts and prayers are with you and your entire family.

We have a web cam so that my mom (who is 5 hours away) can see her grandbabies any time she wants. It's really a big help. It might be something worth looking into for you, especially if you think there might be any more separations in the future. We have a Logitech and it was really reasonable and easy to use.

Good Luck! God Bless!

K. L

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S.M.

answers from Colorado Springs on

hi i am S. i live in colorado springs i am so sorry to hear that this has happend to julian and your family my prayers will go out for you and i dont know if you can do this but you may want to get some web cams so you can see your other chidren every day i know it wont fill the empty hole you feel but it can help and do some activities with julian to keep yourself busy and your mind disracted best of luck and my family will keep you in mind and in prayer

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J.L.

answers from Denver on

I am not sure if this will help right now or not, but my nephew has had 6 open heart surgeries. Most have taken place at The Children's Hospital in Denver. The doctors and nurses are so wonderful there and will do everything to keep Julian safe tomorrow. Something else ironic, my nephew will be turning 6 tomorrow, so I am praying that is a sign for your family. Good luck and let us know how everything turns out.

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S.T.

answers from Salt Lake City on

I am so sorry that you and your family have to go through this. I will be sure to keep you in our prayers. As far as the empty feeling,the best advice I can give is to pour your heart out to the Lord and let him know what you are feeling. He knows better than anyone else how to give you support and peace. Also know that by being away from your kids you are letting them know if anything happens to any of them you will do whatever it takes to help them, because you love them so much. To see you strong and loving in this situation is the best thing for them. They will miss you like crazy, but they will also see what a good mom you are. They may not fully understand until they have their own, but they'll know you love them like crazy. Keep up the faith and know that God is aware of you and will help you through this. Good luck!

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B.W.

answers from Denver on

N.-
You and your family will be in our prayers. I recently started going to the Children's Hospital because my daughter has JRA- it is a wonderful hospital with a warm, caring staff; Julian will be in great hands. One of my good friends was born with severe heart problems- if I remember right, she had 3 open heart surgeries before she turned 2 (I'm not trying to be discouraging- she is now 26 years old and doing great- she's about ready to adopt a baby- I guess I'm just trying to say that it is very scary, but especially with today's technology, it usually turns out okay). I can empathize with you- I have a 6 year old, 3 year old and 20 month old and stay home and couldn't imagine not having them with me. Right now, you oldest kids are probably having a great time with Grandma, not really understanding exactly what's going on. Julian needs you right now and I'm sure they will understand that. Does Grandma have the internet? If so, maybe you can set up a webchat with them (this helps my niece when my brother is out of town). Another thing you can maybe do is tell them stories or read them books over the phone (perhaps before bed time or something). It'll help reassure them with you being gone and it might also give you a break to keep your mind on positive things. I live in Castle Rock (about 30-45 minutes) from Children's Hospital- if you need anyone to talk to or anything at all. Again, you and your family, especially baby Julian, are in our prayers. Don't feel guilty about your other ones being gone- it is the best choice for Julian's safety. They are getting wonderful bonding time with Grandma, and this way you can focus on getting your precious baby better. Keep us updated when you get a chance. I hope this helps...

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G.P.

answers from Boise on

I will be thinking of your little boy.

It must be hard to be away from your other children. Have you tried a web cam, or a video phone? I have a friend that sells video phones (the ones that were on the Apprentice). I haven't used them, but will be happy to forward on her information if you are interested.

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T.H.

answers from Denver on

I will be praying for you and Julian. For safety and healing and encouragment and just to be surrounded by a feeling of peace and love. He is watching over you both and your other children in Texas. Rest in Him.

Just an idea and I dont know if you can afford it or not but a webcam might be a good idea. We use one to talk to my brother in Texas from here in Colorado. Its alot more personable than a phone call cause you can see them face to face and in real time even though they are far away. It might help put your heart at ease to see their faces.

Goodluck and I will be praying for Julian and your whole family!

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B.S.

answers from Salt Lake City on

I don't have any great advice or experience. I just want you to know that I will be praying for you and your family.
Good luck!
B.

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P.L.

answers from Boise on

N.,
Just want to say that my prayers are with you and your family at this difficult time. Do you have a web cam? It may be a good idea to get one. You'll be able to see your children as you talk to them. There are many types available and not costly at all. We got one when our son was in the army. It helped to be able to see him and know that he was alright. Stay strong and know that you are doing the right thing to keep your beautiful baby healthy. I will keep you all in my prayers and close to my heart.

P. Long

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A.T.

answers from Colorado Springs on

When my baby was in the hospital for 3 1/2 weeks and I was having a hard time dividing myself between my kids my mom told me that my baby was the one that needed me now and that my daughter would be just fine. She was hanging out with grandparents and getting spoiled. I did focus on the baby and I am so glad I did. My daughter had a wonderful time and never even knew something else was wrong.

You are doing a great job, all of your kids will be just fine and my prayers are with you.

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B.F.

answers from Pocatello on

Dear N.,
I am so sorry to hear of your struggles. You, of course, have my prayers, and I will be praying even hard during the time he is having his surgery.
I by no means have had to go through what you are going through, but my two daughters were sent to my Mom & Dad's house for two weeks before I gave birth to my twins. I was 1 1/2 hours away from them, and I missed them so much. I had a very good friend who brought me two notebook...one for each of my daughters....and told me to write them a letter at least once a day. I wrote in their notebooks more then once a day....telling them how much I missed them, funny little things that had happened to me that day, and just "this and that". It was not as good as being with them, but it did make me feel closer to them. They are now grown up, and they have kept their notebooks for me to write in through the years. It is fun for them to look through them, and to read a childhood of memories....feeling that would not have been said in our busy lives.
Even though your children may be a little young to read them now, they will cherish them in later years. It might be one way for you to feel them closer to your heart. You might even want to write one for your little guy also.
I had a freind, who lived in the apartment complex my husband & I lived in when we first were married, that was faced with a daughter with a heart defect. She also went through the trials of open heart surgery. Her little cutie came through surgery beautifully....with very little problems. She did stay in the hospital for a while, but did come home. I don't know how she was growing up, because we move into a house, and they moved away, but she was doing great!
Thoughts are with you, and the phone lines to God are clogged with prayers.

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S.P.

answers from Denver on

My thoughts and Prayer are with you and your family. Is there any way you can do the computer web to see each other? Ask the hospital if they have anything you can use. You would also have to have the people in Texas have it too.

Blessings to you!!
Stella:)

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N.W.

answers from Salt Lake City on

My family went through this almost a year ago.

-You're a good mom!
-Once your kids are home, they'll quickly forget they were ever gone.
-They're having more fun than you are because they're in a cool, new place.
-They'll have a better relationship with grandma always

-Julian needs you close
-He'll be OK - it's a great hospital
-RSV season is almost over.

If grandma has internet, we bought 2 web cams and used SKYPE for an hour or 2 per day. I was away from my kids for 7 weeks. It helped sooooooo much. We'd just turn the webcams on and the kids could stop in and say hi or run by or run around. Sometimes I'd watch them eat dinner. Don't try to discipline them from afar or solve disputes. Defer everything back to grandma & grandpa.

You'll miss them less when you can hear them fighting with each other. (i know, i know...but it's so true!)

Also, if the kids can stay at grandma's until Julian is out of the ICU, that'd be good.

Important: get a HUGE bottle of hand sanitizer for the front and back doors. Make every person who walks into your house sanitize or wash their hands for 30 seconds if they hate sanitizer. Sanitizer is better because most people don't wash their hands long enough. We waited until our daughter was sent back to the hospital before we started strictly enforcing this. Please don't wait! If someone is sick, don't let them in your house. Period. It's not the time to be polite.

If your kids don't go to daycare/playgroups/etc...they're not likely to pick up bad stuff to pass on to Julian.

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A.R.

answers from Denver on

I'm sending good thoughts for Julian's surgery to go well and for your family to be reunited soon.

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D.K.

answers from Denver on

You all will be in my prayers, Hugs and love sent to you and your family. God is watching over you and guiding you and please let us know how things go!
Maybe get a webcam for you and your mom (if she has a computer) so you can see and talk to them at the same time.

They know you are doing so much for their brother and I am sure it is incredibly hard not to have them with you.
I cannot even imagine, but know you are amazing, God loves you and your family and you are in our prayers.

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M.L.

answers from Colorado Springs on

N., I'll certainly be praying for your and your family.

Denver Children's is a terrific place for your baby to be! One of my granddaughters was there for several weeks right after she was born - her little heart was not working properly and they put a valve in it when she was about six weeks old. Her older sister (at age 2-1/2) thought baby sisters were people to visit every day! She was surprised when Jenna came home for good. But that's a different story.

I know the house must seem incredibly empty and much too quiet, and you miss your children dreadfully, but you can also be thankful you have such a good situation (under the circumstances); they're having good care and love from their Grandma, and perhaps she'll be able to make it a special time for them to remember. I'm sure they're worried, too, and miss you.

For your part, the most important thing is to stay in touch with them. Does Grandma have e-mail? If she does, e-mail them every single day, if only to say, "Hello - I love you." If you can attach pictures, do that as much as you can. E-mails don't have to be long - they just have to be there.

(I just looked at the other responses, and if you can do a webcam thing, that would be great, too. I'm not 21st-century enough to know about those. I just know that keeping in touch is key!)

If Grandma doesn't do e-mails or computers, call them every single night. Talk to both your children every time, and listen to what they're doing each day. Send them a nice, clear photograph of the whole family if they don't have one. Texas is not that far away if you can keep in touch.

Remember, this gives you the opportunity to focus on Julian, which is absolutely necessary. So you can be thankful. It's a cliche to say that every cloud has a silver lining, but looking for whatever may be good about your situation can help you to keep going.

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M.A.

answers from Denver on

N., I don't know you. I am so sorry for what you are going through. I will pray good gives you strengh, guidence and comfort.

M.

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S.L.

answers from Denver on

N.,

I just wanted to let you know I know where your at and how you feel. My son was only 5 months old when he had open heart surgery at childrens and my other son was only 2. God knows where you are at too and he is watching over you. He says he only gives us what we can handle. I will be praying for you, your son and the doctors. The doctors at childrens are wonderful. My son just turned 8 on friday and is a healthy happy beautiful boy. I am sure your son will be the same. As far as the other children go they know there mom loves them and grandma loves them too. They will be fine. I know it is hard to have them that far away I didn't see my son for almost 3 weeks and that was hard as well, but my son was just fine because he was with people who loved him very much. If you need anyone to talk to I am more than willing to talk with you or pray with you. I know you don't know me but I am sure God put me here for a reason. My number is ###-###-#### and my email is [email protected]____.com if you need anything. God Bless and I will be praying for you.

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C.Y.

answers from Denver on

Hi, N., I am praying for your little Julian, as well as you and the other children. God Bless. -C.

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A.R.

answers from Sioux City on

My thoughts & prayes are with you! I hope all goes well for little Julian!!

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N.R.

answers from Denver on

Oh Sweetie - My thoughts go out to you. Our daughter had 8 open heart surgeries at Children's Hospital. I know all the doctors and nurses there. It is truly a wonderful place, despite the need to be there. You will be in amazing hands. If you ever feel the need to speak with someone who has been down that road, feel free to call me - ###-###-####. Your other children will be fine. Your thoughts and energy need to be with the child going through surgery right now. Set up a time to call your children daily but let them know exactly why you are where you are. Good luck to you and your family, I really wish you all the best,

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S.G.

answers from Boise on

N.,

I pray that the hands of God will wrap around you and bring you peace and comfort as you go through this difficult time. Your little Julian will be in my heart and prayers during his surgery and recovery. Love and hugs to you.

- S.

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J.W.

answers from Pueblo on

Bless your heart and bless your family. May God's hands be with the surgeons and surrounding your children!
Hugs!
J.

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J.S.

answers from Provo on

Honey,

I am so Sorry that you have to deal with this. It is no fun to have to watch a loved one, especially your own baby have to go through surgery.

I have a 2 year old who has had 15 surgeries by the time he was 15 months old. It wasn't one a month, it was more 5 in a week, take a break for 2 months or 3 months and then back in again. But it was very stressful for everybody. I also am a stay at home mom, but I had 3 older kids. All in school or preschool, so they couldn't go to Grandma's. Luckily, Grandma was able to come to our house. But during surgery time, I never went home and half the time they were not allowed up to the hospital. It was very stressful. There is more to my story that I won't get into, I just want to let you know that baby's are very strong and they come as fighters. They can handle the surgeries much better than adults. And as for your other kids, you did the right thing. If the situation is handled correctly, they will think they are having a big party with Grandma and when they come home, they will not want to.
I pray for you, and good luck. I really think the hardest person this will be for is you. As you are torn between your kids and your baby and then the stress of putting your beautiful baby into the hands of the surgeon. Pray for peace that the you will be ok with what ever the Lord has in store for your child. There were many times, that I wasn't sure if I would bring my child home alive, but I had peace that I could deal with the out come. I am glad that he has so far come home each time, he is a fighter and today, except for scars you would never know what trials he had just one year ago. He is healthy, he has a very smart mind, and he loves music and talking. He is behind physically and developmentally, but he is catching up very fast.

I know yours will do the same. Feel free to email me at anytime for more support. Most hospitals have free internet for the patience. You just bring a laptop and it is a wireless connection. I used this to have contact with my outside world. By having a network of friends and family to contact each day, I was able to blow off steam or cry on someone's shoulder at various times of the day and night.

God be with you.

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S.S.

answers from Provo on

N., my prayers are with you, Julian and your other babies. Concentrate on how good your reunion will be. Be grateful that they are safe with Grandma, and focus your love and healing intention on Julian. Send it to him every second you are with him.
God bless all of you, and the surgeon's hands with guidance.

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