2Nd Heart Surgery Quickly Approaching

I'm not sure what advice I can offer ... but I do believe in the power of prayer. Miracles still happen every day, sometimes they're just hard to recognize. ;) Enjoy your miracle and look to God for strength to help you through this scary time.

I'm sending my very best wishes and thoughts your way and will keep your family in my prayers.

Wishing you comfort and many blessings,
J.

Hi G.!

I am a nurse at Childrens and although I don't work on the cardiac unit, I wanted to pass along some suggestions. If this is a scheduled surgery, call and ask about the process and how long you will be able to stay with him (until they take him to the OR, until he is sedated, etc), also think about what you are most comfortable with. Think about who you want with you while you are waiting, are you someone who wants a lot of family and support or someone who does better just having one person there with you. Make a list of questions and see if you can get them answered before the big day, the more knowledge you have the more piece of mind you will have. Bring something of his to hang on to while you wait. Bring a magazine, not that I expect you'll read while you wait, but that can give you soemthing to look at to pass the time. Please feel free to e-mail me if there is anything I can do to help. He is in great hands, and this surgery (although stressful) is a step toward making his life better. Kids are so resilient, he'll be himself again in no time.

G., All I can tell you is that you gotta have faith in the Lord. He gave that precious bundle to you to love, and luckily his problem is solvable. Give it to God and all will be well. I will be praying for you and your family.
T. (mother of four boys)

Dear G.,
Children's Mercy is the best of all places for children to go. We send all of our patients from Wichita there that need specialized care. My great nephew was also born w/ TOF almost 3yrs ago. He also had other complications... He has downs syndrome. He has not got the heart surgery yet.. hopefully in may or june.. we can't hardly wait. He got bowel reconstruction surgery back in november.. and since that surgery.. he has started growing so very much!! We can only hope that when he gets the heart surgery he gets a good growing spurt going also. I work on the top in the midwest cardio/thorasic unit in wichita and I have talked to our surgeons and I know that a very prominent doctor here has assured me that Loftland and Gellat are the best. He has even talked that someday he would love to be able to offer that here.. and get surgeons that qualified and caring on his team for children. Please call Childrens Mercy and ask them if they have other parents that have gone through this surgery in the last 6months or a year that you could possibly talk with. My niece has gotten great support through them passing along other parents names and numbers that have agreed to be a support system. Also, she has followed up with support from other parents who have stayed at the ronald mcdonald house there in K.C.
My thoughts and prayers are with you, I know this isn't easy. I watch my niece deal with this every day... and I just wished I could take the pain for her, but I can't, so all I can do is to hold her hand and let her know that I am here night or day any time any place. No matter what.
Keep writing and talking about it.. I find that helps.
Please let us know if there is anything we can do.. and we will do what is ever humanly posssible.
T. W.
a little about me : Grandma of 2 ages 4 1/2 and 21months. watch the youngest 1st shift before I go to work and the oldest on days he is not in preschool. so I babysit bout 35hrs a week plus work 40+ at the hospital.
nope not crazy.. just wouldn't want it any other way! thats what families are for!

G.,
Your situation pulled at my hearts strings. But G. our God is an awesome God. Pray about this and let God lift this off your shoulders. Pray for the doctors before, during and after the surgery. Pray for the nurses and the team that will be in your son's operating room. Pray for peace during the time of the operation for yourself and your husband. Pray and believe for a quick and healthy recovery for your son. I will keep you and your son and your husband and the team at CMH that will be taking care of your son in my prayers and believing that he will rebound quickly from this. I think and believe that you and your husband are alot more stronger then you are giving yourselves credit for. Remember that God will protect you and your family.

Please keep us updated on the date and as you can on his status.

If you ever want to chat or need a shoulder you can email/im if you are on ____@____.com

My nephew was born with heart problems (he was missing a valve) and had several heart surgeries when he was a baby until he was 4 years old. Then his surgeries weren't as often as he wasn't growing as fast as babies do. He got a heart transplant when he was 12 at Cardinal Glennon in St. Louis which is a wonderful hospital. He was sent there from Children's Mercy. He is 17 now and doing well although he still goes into the hospital here at Children's Mercy 1-2 times a year for some type of virus he gets. It is a tough thing to have to go through. Pray and trust the Lord. He will give you strength and peace.

I'm sorry I don't have any advise, I just wanted to say that I am going to say a prayer for you and your son. I am a mother of 2 and cannot imagine what you are going through. God will give you the strength that you need to get through this. Good luck to you all.

I am so sorry to hear what you and your family are going through. My brother had open heart surgery at 2 years of age, and is healthy at 35 years of age. My youngest son was born prematurely with pneumonia and almost died. He was sent to a different hospital than I was in and the only thing I could do was pray for the 3 days before I got to see him. I just enjoyed the times I could spend with him in the hospital and prayed more when I had to leave him again. He had to have surgery on his stomach at 8 months of age. I know the agony of having to leave your baby with strangers, and not knowing what will happen. The best way to make it through is to put your son in Gods hands. Even though it's hard to imagine, He loves our children more than we do.Continue to reach out for support, also. I don't know what I would have done without the support of my family. I will pray for you and your family. Please update us on his progress.

I cried reading your story. I will be praying for you and your little one. Don't have much advice just give him all the love you can ask family and friends to be there to support you. Good luck on you journey. I pray all goes well. R.

my heart goes out to you! Our daughter also was born with Tetrology of Fallot/pulmonary atresia. Gracie also had several other issues. Her 1st surgery was at 3 days, with the 2nd at 19 days.
We live outside of St Louis (about 1 1/2 hours away), so for the 1st day, I was still in our local hospital. My husband stayed at Childrens-St Louis with Gracie, & the rest of our family split their time between caring for me & being support for Gracie. It was heart-wrenching for me to be stuck in the hospital & not with our daughter. But, as many wise women (my Mom in particular) said, by staying home...I was allowing myself to heal (traumatic c-section, with some complications) & I was providing a stable atmosphere for our older son-age 6.
For Gracie's 2nd day of surgery, it was different. We knew it had to be done, we knew we had no other options. With this in mind, my heart was at peace. My only request was that my husband would hand Gracie over to the team. I knew that I could not do it...but, I also knew that I wanted her held tightly before letting go. Sooo, that's my recommendation: stay focussed on the need for surgery & be sure to hold him tightly before letting go.
Please keep us updated & feel free to contact me. My prayers are with you.

While I don't have any advise, I do want you to know that I will be in prayer for you, your husband and baby. For such a time as now, you will need to acknowledge your fear and remember that your love for that beautiful baby FAR exceeds the fear that is attempting to grip your heart. It is actually good for you to "break down" and bawl, it is healthy. But then get back on that horse and ride him with confidence that God has made you and your family pretty special to choose to grow you like this. Your experience down the road will be used to help others. Please post an update on the mamaboard after surgery so that people are updated and can hear firsthand about your miracle. May God bless you.

G., I completely understand your anxiety!! My son was born with cleft lip and palate. He had surgery to repair his lip at 3 months of age, and surgery to repair his palate at 13 months of age. As several people have already suggested, try to find out everything you can about what will happen the day of surgery. I am a planner and I find it comforting when I have some idea of what will be in store. For my son's first surgery, when they called his name in the waiting room I thought we were going to be handing him over right then and there so I started crying. I didn't realize that we were just going back to the pre-op holding area and that it would be another hour before he went back to the OR. We were very lucky with that surgery that he slept the entire time he was back in the pre-op area. In fact, he was still sleeping when I handed him over to the anesthesiologist. That was a blessing! It wasn't quite so easy with his next surgery at 13 months. He was hungry and cranky in the holding area and bawled when the anesthesiologist and nurse came to take him away. I tried to hold it together for him. I really tried. But I just lost it. My husband did too. But they had given him some versed to calm him down and as soon as he got around the corner and couldn't see me anymore he was perfectly content and playing with the anesthesiologist's stethoscope. So .... my advice is to try to calm your anxiety by finding out all of the facts that you can. And like someone else said, schedule the surgery as quickly as you can. I found that the anticipation was much, much worse than the surgery/recovery itself. And just try to do the best you can when you have to hand your little one over. No one is perfect and you can't plan what your emotions will be when you hand him over. It's a hard thing for a mom to have to go through. I wish you and your family the best!

WOW! I'm sorry to say I don't have any knowledge / past experience to draw on and share. However, I know a man that knows and sees all. A wise, kind man name JESUS. The Bible tells us in Proverbs to "Trust in the Lord with all our hearts and lean not unto our own understanding, in all thy ways acknowledge him and he shall direct your path". Whenever I find myself in a situation, I really don't know how to handle (happens a lot with me and sick kids). I pray, put it in God's hand and accept that he can see the end before I see the beginning. Trust God with your son! Pray over him, pray with the doctors, pray with your husband and ask others to pray for you. That's what I plan to do!

G.,
I can relate to your fears. My son who is now 3, has had 4 major surgeries and several minor ones due to mitochondrial disease, a tethered spinal cord, and a brain malformation. It's a difficult thing to watch your child go through so much, but I think you will be surprised at the strength that is there when you need it. I don't know your religious thoughts, but I have found that praying helps. I also think that having a therapist is essential to any parent with a child with special needs. It gives you a place to vent your fears and feelings without judgement.

I would suggest scheduling the surgery as soon as you can. We did that with my son's last spinal surgery, and it made the anticipation time less. I think the longer you wait and fret about it, the worse it is.

Also, know that children are so resilient, and surgery to them is something completely different than it would be to an adult. My son was up jumping 4 days after spinal cord surgery. The dr. told me that kids are different because they don't have the psychological baggage with pain. They just know when they feel better, and they are happy about it. Keep your head up. I'm sure your little one is in GREAT hands at Mercy, and I'm sure he'll do well with the surgery.

Best to you.
T.
mom to Claire 5, and Andy 3

The only thing you can do is just to know that things will work out the way they are suppose to. I will pray for you all that the surgery will be a successful one. Good luck with him.

I'll be keeping you and your beautiful son in my prayers. God bless you!

You get through by turning this situation over into the hands of that little 6 month old boys creator.
You pray as I will be praying for the Father to guide the hands of the surgeons and protect that precious child.
then you trust him, take a deep breath, thank Him and wait.
Take the peace that only the father can give in times like these.

I am so sorry you are having to go through this. I can't give advice, since I haven't been in your shoes, however I was a nurse at CHM (actually on the heart floor) before becoming a SAHM. I just want to assure you that your little boy will receive excellent care. I can't imagine how hard it is going to be for you to hand him over that day for surgery, but I know as a mom that we will do anything for our babies. As hard as it is, you will somehow gather the strength needed to do what you need to do for your baby. I'll say a prayer for a complication free surgery and quick recovery for your sweet baby boy. Good luck!

our daughter had open heart surgery one day after her first birthday at Childrens Mercy Hospital KC. WHile it was a horrible horrible experience for me (as you say..one does bond with a child by this time) I can't imagine a better place for her recovery. they did misdiagnose her not realizing she was in respiratory distress because she was asymptomatic (don't you love the art of medicine) ....and it was hard to see her in pain....but she bounced back in astonishing order.

even the medicines she took that seemed to make her fearful..even that wore off and I was worried the hospital experience would scar her. 3.5 years later she is fearlessly friendly and no hangups seeing drs with white coats.

and besides: it had to be done. no choices there. (ours was a repair to a VSD)

My prayers are with you! I know what you are going through. I have a granddaughter (now almost 3 yrs old) who was born with Downs Syndrome. She was born with many problems, cleft lip & pallet, problems with her intestines and more, but the the biggest and scariest was a defective heart. Although we live in Wichita, they sent us to Children's Mercy in KC for her birth and she has had several surgeries there, her first being only 1 day old. She spent the first 3 months of her life in NICU and I was truly amazed at the love, care and overall concern they show there. Her open heart surgery was also at 6 months old and you do have a very strong bond by that age. Even thought I'm only grandma, I spent hours upon hours with my daughter-in-law at every appointment, every surgery, stayed in KC the first 6 months of her life more then I was at home and just can't help feel frightened. I remember when we were holding our little Daytona waiting for them to take her into surgery and her mommy and I just started crying when we had to hand her over to the nurses to prep for surgery, but they are so understanding. Your little gift from God will be in the best of care there. The doctors and staff there are awesome and so willing to work with you and are truly very understanding of all your concerns. Just pray and put it all in God's hands. I'll also be praying for you and your family and especially your little boy. God Bless!

Hi. I'm so sorry you are going through this. I will pray for you and your little guy.

You have alot of faith. One of kids went septic, nearly died. We needed to go in and do a pericardial window. Not actual surgery to the heart, but in her weakened condition, not a risk free surgery either. The people at Childrens Mercy know what they are doing. I know how scary it is, btdt. You take it one day at a time.

My prayers are with your son and your family.I almost lost my oldest daughter when she was only 2 months old to pyloric stensois(stomach muscle closing) not sure on spelling. If the doctor would have not called us at 4am to get to the doctor as soon as they opened. She was starving. I understand kinda what you are goinh through. Once again i will say a few sxtra prayers.

Well I just checked this and was getting off i had been up all night. This caught my eye. i will pray for your baby and you and hubby. he will be fine. I had a girlfriend who baby had heart defect and her chest had to be literally open for over a month, in St Louis.They could nto touch her jsut look at her. She is a 11 year old doll baby now. God did not bring you this far for things to go wrong now. Use every bit of faith and ask for prayer from everyone. Then you have it. God bless you. Try and i know it will be hard to not think about it, enjoy each little thing he does. I know he will be fine. They have this so downpat any more. I know it would scare me to. All I can tell you is Pray and everyone who reads this prayer for them. You may email anytime at home. God Bless and kiss that little biy. He already is a mirical! God did it once he will doit again. It is us letting go, and i am hard at letting go to. Prayers your way! J. jean

G.
It is never easy to have your child go through any time of procedures let alone have to stay in the hosp. We have an almost 4 year old, Jackson, who was born with Posterior Urethral Valve which lead to kidney disease before birth. His first surgery was at one week, like your little one. He has since gone through 8 surgeries, including a kidney transplant. I have to tell myself before each surgery that this will help him to feel better. It will never be easy when your child has to be put under. Always be sure you have great faith in your doctors and surgeons. If you ever feel uneasy with them speak up. You are that child's advocate so always make yourself heard, a good doctor will respect you for that. God will never give you more than you can handle, just keep the faith and know that he is holding your little boy everytime you turn him over to those nurses.
Good luck to you

My aunt had to go through this with her first and only child also. It was very stressful, but she is now approaching 5 and absolutely wonderful, healthy and happy. Her surgeries were both open heart about the same timing as your sons, not sure if the condition is the same, but hope this brings some comfort. Good Luck and breathe it is so important for relaxation and destressing. R.

G., my suggestion would be to call the Dr.'s offices and get in touch with the social workers at Children's Mercy. They are super great and I bet they have something that may help alleviate your fears...it's even possible one of the Dr's has a surviving patient whose parents you could talk to.

Remember Children's Mercy is unlike any other regular hospital...they understand the kids and they GET what the parents are going through...just ask and I'll bet they point you in at least one or more good directions. Good luck and our prayers are with you.

G.,

I have a sister who has the same heart defect. She had her surgeries at CMH also. These surgeries that your child needs are a road to a normal healthy life! I know and understand how awful it is to be waiting for this type of event. The Cartiologist at CMH are the best. The type of procedures they will be doing are tried and true. I know you already "know" these things I thought it just might help for someone else to say them. I also want to mention that my sister had her surgeries at CMH from 1980 to 1986 and she is now 28 years old!!!

G., So sorry to hear what your son is going through. I have a son who has had 6 brain type surgies before the age of 2 so I know how you feel. Feel comfort knowing that he does not know what going on and will not remember anything being so young. As far as your self you just have to have the faith everthing will be ok. The best thing you can do is always remain calm and focused. I once watched my son stop breathing and be put on life support. I had to stay calm or I would have had to leave the room. I wanted to be in the room so I new what was happing at all times. Its very hard to have a child who is sick I will not lie but when they wake up and smile at you, your heart will melt. My son is now 6 and I never know when he will have a nother surgery but somehow I overcame the weeks we spent in the hospital and they seem distant memories. Someone told me that every road has obstecules and how you travel is up to you. I think as hard as it is to turn over your baby you will do just fine. After all hes only taking a nap in the next room. ( or at least that what I tell myself)

I do not understand what you are going thru but my friend is going thru the same thing right now. Her son had open heart surgery when he was five days old and he spent the first three months of his life at Childrens Mercy. HE will be one at the end of the month but he will be back for his second surgery in the beginning of April. I never went thru anything this scary with my kids but with my mother. I know that all you can do is take it one day at a time and be strong for you son, for he will need you to be. And if you want to talk to my friend about any of this, I know she would be happy to talk to someone going thru a similiar situation, let me know. I will keep you and your family in my thoughts. You will get thru this and so will he.

I understand your pain. My son had a heart transplant last summer at 3 months of age. We go to CMH for all his follow up care. He undergoes frequent heart catherizations and biopsies. It is hard to had your son over. But rest assure, the docs and surgeons are greast. They will even wait until they have "gassed" him to sleep before they start an IV. That means that you guys can have nice, painless quality time together before surgery. Also, they have EVERYONE prepared for this surgery. If God forbid something happen, they have all equipment ready to go. But they won't need it. You need to realize with TOF that he HAS to get this surgery. You will be providing him the best care possible. Think of it like this, if you didn't do the surgery, you would not be helping him stay alive. I am a part of a congenital heart defect families support group based out of KCMO. Visit their website at www.chdfamilies.org. You can send out a mass email to the group and ask them for their tips and experiences. There are also 2 adult members that have TOF. They have gone through these experiences. If you need to chat, email me at ____@____.com Get a hold of this group. They are great.

Dear G.,

My heart and prayers go out to you and your son. Four years ago our son was born 4 months early weighing only a pound and a half. At only two months and weighing only three pounds he had heart surgery. He was on a vent for three months and on oxygen until he was 7 months old. We stayed with him in the hospital for four months and were a 100 miles from home. It was the most difficult time of our lives. We turned to the Lord in our darkest hour and he carried us through it. I don't know if you are a religous family or not but if you ask him he will help you through this. Today our little miracle is doing great and he is huge for his age. God bless.

My prayers ar with you and the little one. Heart sugery is trumatic evan for an adult and family I know I went thru it a little over a year ago. It has made a huge differance in my quality of life and it will with your son also. god will help you get thru it and at least your son is to young to be afraid so you don't have to combat his fears along with your own. Know that many peaple will have your son (and you and your husband) in their prayers.as you go thru this ordeal of waiting. He will give you strenth.