Needing Advice/experiences with Infant Heart Surgery :(

Hi J.- I can totally understand how you feel. I was 22 weeks pregnant when we found out about our son's heart disease. He has a few problems with his heart-one of them being Coarctation of the Aorta. I was a wreck also and preety much numb after finding this all out. I think one of the best things that supported me was the support I got from the cardiologist and the surgeon's team. We actually ended up taking our son up to Children's Hospital of Wisconsin because they have a terrific heart team up there. They specialize in taking care of little one's with heart defects. They were so warm on the phone and understood how my husband and I were feeling-and in person were even more warm. From the get go they were supportive. It made me feel so good to know that my little guy was going to be in such good hands. I was very nervous about having time to bond with him. We were adamant about holding him when he was born. I held him for about 20 minutes before they took him away to the NICU. I delivered up there. I started the whole pumping process immedietly because he also could not breastfeed until after his first surgery. After the surgery I was able to start with my pumped milk and a few days later I was able to breast feed him. He latched right on. I had the lactation consultant team helping me every step of the way. They were very supportive-and make sure that your voice is heard about brestfeeding. You have to stand your ground though-and make sure that your baby is getting your milk as soon as she can.

I did not go to Children's but I have been through all this. It is tough-but my little guy is all over the place and acts like a normal baby. He moves around and plays more than other babies!!! (He is 13 mo old now and has actually had another surgery and will have one more around the time he is 2). I would say that supportive or not-you are your child's advocate. It does not matter if Children's does not support breastfeeding-they should have lactation consultants on staff. Call them immedietly and get them on board to help. They do have a voice in all this. Also-make sure that they medical teams taking care of your little one know you will be holding her. They should have very good reasons if you cannot hold her-they should also understand how vital to the baby it is that you and your husband hold her-it very much calms and soothes them.

Watching her go through this will be very tough-but you will have the strength. She will love holding your finger and seeing your face. It will soothe her-and she will have so much strength because of you. Regardless of all the tubes-underneath it is a your baby who needs your touch. They become such tough little scrappers after this. My guy races around the house-hits his head and never crys!! He is truly amazing.

I know this is hard to hear-but it will be ok. When you take her home-she will grow big and strong. If you need anything-or just want to talk to someone who has been through what you are going through don't hesitate to write me. I know it is hard!! My email is ____@____.com luck-I will be offering a prayer for your little one! A.

I know nothing about the heart surgery, but my son was in the nicu at children's for 6 weeks (born at 30 weeks) and I was astounded at how unsupportive the staff was about breastfeeding. Luckily I had already successfully breastfed one preemie and knew what I was doing. The tubes are very scary, but you get used to it and just force yourself to move past it when its your child. They will tube feed pumped milk as soon as you can express it and we just slowly switched from tube to breast feeding. The main hurdle was that the nurses and doctors didn't want to believe me when I told them how much he was taking from the breast, they really like the control of knowing how much they are eating from a bottle. Yours will be a different story as she won't be preemie. Still, he got only breast milk, you just have to be more of an advocate for the breast feeding and know that you will be able to keep it up at home. I was very surprised that they did not have lactation consultants on staff, they consider the learning to eat something for an speech therapist to help with which is not as supportive. The nurses were always apologetic and annoyed by the lack of lactation consultants. Really you just have to constantly remind them that your child is receiving pumped breast milk.

It was difficult to balance my daughter's needs too (she was 4), its a stressful time, but you will all get through it with lots of love. They have a lot of stories on the children's website that are helpful. Good luck with everything, just remember that by this time next year you'll have an amazing 9 month old.

J. -

i cannot offer my experience with infant heart surgery. i have no idea how you must be feeling. but, i can offer my experience after baby is born and dealing with the NICU, tubes, etc.

you are so much braver and stronger than you know. it will take quite a while to notice it with all the drama that will be going on, but don't give up. you will come out of this being this woman you didn't know you had in you.

my ella was born 2/22/07 with a "congenital anomaly" - a phrase i despise - called "pierre robin sequence." she has a cleft palate, an underdeveloped chin, jaw and tongue. she will have her palate repair surgery next month on 2/25/08 - 3 days after her first birthday.

did not know anything was going to be wrong with her b/c they couldnt see it from the ultrasound. we didnt find anything till she was 2 days old!

i was not able to breastfeed my first baby b/c my body only produced colostrum, due to some hormonal problems. this time i was excited. but, ella stopped breathing each time i breast fed her b/c of the anatomy of her mouth. i gave up on that dream with many tears b/c i figured breathing had to be our #1. i couldnt pump enough out to feed her, so we were so lucky to recieve donor breast milk and out of that pain i felt alot of comfort knowing that she did get some breast milk, even if it wasnt mine.

she had a feeding tube since about day 5 and an apnea monitor since day 2. the cords and tubes and wires are very overwhelming. i always felt like i was yanking them or going to pull something off. i didnt want to do anything to make the beeping start! but, eventually you go home and these things come with you and they become a part of what the "new normal" is for your family.

i never wanted my normal to be tube feeding a baby in the middle of the night or scheduling surgeries. this will be hard and you will be stretched and think it is way more than you can handle, but then your first year will be over before you know it and you WILL be able to remember amazing things from this year which you would never give up for anything!

i would do everything these next 2 months you can to get emotionally, mentally and spiritually stong because you will need all the energy you have!

i had a 16 month old when ella came. i would say spend a lot of time with him now - and later! i didnt do that enough and i see how jealous he is right now. i would find people you love and trust that will take him out on dates and do fun things with a few days a week so that you know hes having a great time and you can still spend time with the baby. also have people come to your house to hold the baby while you play with your older child.

remember to use your intuition and remember that you are the mother. this kid was growing in you for a long time and that kind of makes some what of a bond form. you will know this baby better than anyone else and you have to not be afraid to tell the docs what you think is best. a good one will listen to all your concerns and not make you feel stupid.

i would also be very careful whose advice you take - even mine! not because im lying, but you have to figure out what works for you, and this is what i figured out worked for me. i didnt take everyones advice. i didnt do everything the docs said. i didnt spend alot of time looking at every website dedicated to these things bc they were very overwhelming to me.

ella is doing great. she is wiping snot on my leg as we speak. she wants to take a bath and is attacking my leg so i will get up and go with her. so, off we go. good luck to you. i will pray for strength and healing.

much hope,
A.

I am sorry I do not have a lot of time to write, but I have a wonderful story to tell you. Two years ago, I went through exactly the same thing you are going through now. I delivered my baby at Prentice and my baby had heart surgery at Children's Memorial Hospital. You could not be in better hands. Your baby will have 2 of the top pediatric heart surgeons in the nation! Not only that, Children's Memorial has the most caring and loving nurses I've ever experienced. My daughter had the Norwood surgery when she was three days old. There were tubes and wires, all kinds of medical equipment, and tears from not being able to hold her right away. She never did breastfeed, and it was a while before I could hold her, but she and I are inseparable now! We stayed at the Ronald McDonald House for three months, for less than half of what we pay for our apartment. We took pictures every day so that we could look back and rejoice at her progress... Although, your baby has to go through a major surgery, joy will come in the morning! Today, our baby is the happiest baby and she continues to bring us joy on a daily basis.

Dear J., I do not have any stories to share, I just wanted to say that I will pray for you and your baby. I have heard of this before, and I've heard wonderful success stories.

You and your baby will bond just fine! When I had my daughter, I had a c-section, but I also had some pretty severe medical issues that did not allow me to hold her very much the first 2 weeks she was born. I didn't get to "bond" with her until she was about 3 weeks old...and let me tell you, now we are like two peas in a pod!

While I missed out on holding her the first few weeks, I was still able to see her, touch her little hands and face when she was near me...and we made up for lost time once I was able to hold her close and be with her.

Everything will be fine, and you and your baby will have an even stronger bond when she comes home from the hospital from her surgery!

God bless you and your baby!

J.,

My heart goes out to you, as a former PICU nurse at Riley Children's hospital hopefully I can help with that perspective. A coarc is fairly easy on the heart surgery scale. Now I know that doesn't ease your concerns but take the lightheartedness easy and it will help your perspective soon. The first time you see a baby with all those wires you freak out...but when it is your baby you will feel much better because you will see your baby and quickly want to touch her. As far as breastfeeding goes, hook up immediately with a good lactation consultant..if there is not one at the children's hospital, find one at the hosp where you will deliver or would have. You need to be pumping asap, work on milk supply, then when the baby is ready for breast feedings, meet with the consultant. If you have a feeding plan established ahead of time, you will more confidence telling the nurses and docs. "I am pumping and will bring breastmilk in for you to feed for my daughter" The tube feedings are easiest in the first few days, but if she gets minimal bottles than breastfeedign should go fine..much like a preemie who has been tube fed then transitions to breast. If she is able to feed orally, she should be at the breast. Scaring, dressing, wounds etc are small and won't get in the way!

Give yourself time to adjust and then enjoy your little angel!

Hi There,
I don't know anything about the heart surgery, but my daughter was recently a patient in the picu at Children's, and I was amazed by the support given to my daughter andd the entire family. They are truly amazing.
I am sorry that you and your family/newborn will need the surgery, but take comfort that your child will be in the BEST place for his condition.
Take Care of yourself,
K.

J.,
Your story sounds much like mine! I was a single mom with no other children though. It is a tough situation to be involved in. There is nothing you can do but pray for the best and expet the worst. I know that sounds harsh but it was and still is the best advice I have ever been given. My son is now 12 years old and will have to endure more surgeries as his body grows. He has undergone 3 open heart surgeries in his short life and being nervous is understandable. When I found out I was due to deliver in 2 weeks from the day I found out. I too had a c section but was in the same hospital. You have all my prayers coming your way as I feel your anguish not being in the same place as yoru daughter!
His surgery occurred when he was 13 hours old and that was tough to take! I will say this as this will truly help you through this time... While you are recovering have someone who can be with her after the surgery. Take pictures and video (lots and lots!) This will let her know she is loved by many. Once you recover and can be there I would ask them about breastfeeding again. They can show you how to breastfeed while the child is with a breathing tube! Don't let them tell you any different. You can also pump breastmilk for her. This will give her every bit of nutrition she needs just the same. I'm sure you will do great with this just be strong for her and if you get upset walk away for the moment. Never let her sense your fear or sadness. They do pick up on that! If you ever want to talk just drop me an email and I will be more than happy to be a listening board for you.
M. at NationalPleasures dot com

wishing you all the best!
Sincerely, M. Hayes

Hi J....I am very sorry to hear about your situation. I have just gone through a very similar thing with my daughter born March of 2007. I also have a 2.5 year old to deal with. They are 22 months apart so I can understand your concerns. We knew at 20 weeks about her heart defect and I researched endlessly about the defect, survival rates, hospitals and surgeons. There were many days filled with crying and nights spent awake worrying. I slowly replaced those feelings with hope and positive thinking. I decided that I would be her biggest supporter and think everything positive about her birth.

I had a wonderful cardiologist who met with me every four weeks to do ultrasounds and a perinatologist who did ultrasounds every four weeks as well to check her progress. We chose to have her surgery at Hope Childrens hospital and were amazed at her results. While I delivered at Hinsdale and we thought she could stay at that hospital until I was ready to go, they took her to HOpe in the middle of the night. So I left Hinsdale at 6am the following morning. ON that note, I would recommend delivering where the baby will have surgery if at all possible.

She had her first cardiac cath at 2 days old, her first open heart at 4 days old and was corrected a week before Thanksgiving. I'll tell you one thing, unless you saw her scar, you'd never even guess she had any medical issue.

The bonding is there even if you only hold her for a short time. You'll be at her bedside and she'll hear your voice and feel you holding her hand. You'll have to look past the wires and tubes even though it's hard at first. It can be overwhelming but it's all there to help her.

Breastfeeding is possible eventually. The hospital and lactation consultants will help you get started pumping and storing the milk for when she can eat and eventually you'll be able to do it yourself.

If you want to talk you can email me at ____@____.com. I will be keeping you and your family in my thoughts.

I have a 5 month old little girl. She was born with a kidney that is to big for her body and is non functioning. We interviewed lots !!!!!!!!!!! Of Dr.'s from South Bend to Fort Wayne. And did very much reserch on our daughters future. I thaught that this would be better for me to know everything.Then when the day came for her to have some tests done, I lost it! I could not stop cring! I have all the faith in the world with Rileys Hos. All I can tell you is to cry if needed. I tried breast pump just so I could give our daughter the most --- but that didn't work out like I planned. SO ---- cry when needed, realize that everything is in gods hands, write down questions if you have any --- talk to your baby daily, the bonding will come natual---- after all your baby already knows you, they are a part of you.. I will keep you in my prayers.... If you can go through a C section thatn you can go through anything... I was dumb and chose not to take the pain killers... I could not have asked for better Drs... god bless

Where I don't have any experience with heart problems, my son was born six weeks early. He spent 11 days in NICU. The first night he was on a resperator. After that he had a feeding tube for six more days (using breastmilk). Once he started keeping food down, I was allowed to breast feed. Then he became jaundice (sp?) and had to be wrapped in a blanket that made him glow like a little glow worm. The nurses were very supportive and incouraged lots of contact. Wires and all. My daughter was 33 months at the time. She spent alot of time being shuffeled between grandparants so I could spend as much time with my son as possible. I was a SAHM and I have to admit, it was very hard for me to drop her off every day in the morning and not pick her back up till 11pm. I had very little time with her during those 11 days. I actually broke down and cried one day on the way to the hospital. I remember thinking how unfair it was that I had to choose between my children when they both needed me. Then I remembered that this is a very short period in our lives and niether of them would remember it anyway. So I told her that her baby brother was at the hospital and I had to go take care of him till he could come home. She seemed to understand, but still ended up having several potty accidents even though she had been completly trained for several months. I am sure she was a little stressed too. I know two weeks seems like a long time when you are going through it. But the day you take your daughter home, it will seem like it flew by. Good luck and think possitive. My thoughts and prayers are with you.

Hang in ther I want you to contact www.savingtinyhearts.org i believe they are your best resource. talkt o francie and she will contact you with a support group and some weath of knowledge. is Dr. Wax doing the suregery??? he is great, my kids see him too. They wikll usuallyu work around you beig htere but if they have to they will do what is best for your baby and get you there sometime syouc an eave after three days to be there. I am prayin for you and this will go smoothly, you are at his point now that is great!
love, J.

J.,
I am sorry that you have to go through this. My daughter is 7 months old and had open heart surgery at 3 months old at Children's Memorial Hospital. They were wonderful! Remember that you are the parent and you can tell them what you want and what you expect. Obviously within reason, they will let you do what you want, as long as it isn't a risk to your baby. If you want to pump to provide milk for them to feed do that. You should be able to touch your daughter and talk to her all you want. That will bond you with your baby. I couldn't nurse her, due to it putting to much strain on her heart. i had to pump exclusively. She is now a happy 7 month old!!
Good Luck and email me if you want to chat further.
L.

Greetings J.,

First of all congratulations for your PG!

Based on your words, I will say that there is no doubt that you are an awesome mom. And I am sure that you are going to be an awesome buddy of both of your kids.... no second thought for that.. please don't worry about it... by the way your worries are the sign that you are gonna take wonderful care of your kids once everything will start to become normal.

Regarding your breastfeeding issue.. I think you can still keep your milk supplies on by pumping your milk from the day one and nurses can still feed her that milk instead of formula. Thanks to the technology and pump making companies for that. Hey breastfeeding is not the only way to bond with the kids. You can still hold your kids and bond with them with several other ways.

I don't have my own story to share with you, however my girlfriend had somewhat similar story. 4 years ago she gave birth to her son. It was normal delivery, but her son developed some medical issues and he had to go under some surgery after birth. He also stayed in the hospital for a while and they were feeding him the milk which she was pumping everyday for him. It took some time for him to learn latching. But once he did then she breastfeed him for two years and no formula at all. Now they are like best buddies and nobody can tell that he ever had a problem during his birth.

I have two daughters. I was going to college when I gave birth to my elder daughter who is 8 months younger to my friend's son. At that time my mom came to help me with my daughter and lived with us for one year. All that time I only breastfed my daughter in the nights. But I never used formula for her too. I pumped my milk during my free times and she still got breast-milk till she was 18 months old. No formula at all. By that time she already started drinking whole milk.

Till that time I am praying to God to make things as easy as possible. Still it makes my heart pound harder too, with each thought of such a small baby to go through all that process. I hope everything go well.

Please do feel free to talk to me anytime you want to lighten your heart.

Regards

Hi J.~
I know how hard this can be!! I have a 4 yr old son who has already had 2 heart surgeries. His first surgery was at 17 days old! His 2nd was at 13 months old. Both surgeries were performed at Childrens Memorial. I have 100% complete & total faith that your baby will be just fine having his or her surgery there. Everyone at that hospital is phenomenal! They are really good with helping you thru everything. I know that regardless of what everyone says, you will think & feel how you want to, which is totally fine. Just keep positive thoughts thru it all, and it will all be just fine. My son and 10 month old daughter both have heart problems. They are different than what your baby will have. But regardless of the issue, heart problems & surgery are major. Just be sure to educate yourself as much as possible prior to the procedure so that you are as prepared as you can be. Make sure to ask questions, the doctors down there will do everything they can to help you be more at ease. My son, also was tube fed...for 10 days!!! It was hard for me to accept the fact that after the surgery, he was unable to breastfeed because he didn't remember how--su we had to make the change over to bottles. Another plus, is that they will provide you with everything you need to continue nursing while your child is in their care. Well, I could go on and on, but I won't. Please feel free to email me if you'd like to talk more, or if you have any questions about the heart issues, or about the hospital. I have much experience with it all now!! My email is ____@____.com, if you'd like a wonderful recommendation for a pediatric cardiologist, let me know. My son's & daughter's are both affiliated with Children's and they have multiple office locations too.
Good luck with everything!! I'm sure everything will work out just fine! My heart is with you!!
~J.~

I also have a little one with heart problems - one of his problems was Coarc of the Aorta (plus others giving him Hypoplastic Left Heart Syndrome). He's 2 years and 4 months now, and has had 3 surgeries.

My husband and I also chose to deliver in Wisconsin and have our son's cardiology care and surgery at Children's Hospital of Wisconsin, like another poster A. B. Their cardiac care for children is among the top in the nation and we experienced amazing support from all the doctors, nurses, and staff up there. Do some research and see what you think - Herma Heart Center at Children's Hospital of Wisconsin, and you could work through the Fetal Concerns program to coordinate EVERYTHING. Another great thing about their program is that you deliver in the same hospital where your child is in the NICU... so I delivered at 1am and was in the NICU with my son a couple hours later after I took a nap! I was terrified of delivering at Prentice and not being able to see the baby for 2-4 days while he was at Children's Memorial. I can't say enough about the care we've received at Children's Hospital of Wisconsin. We have done some follow up care at CMH in Chicago and it's a great program, though.

It will be really hard to go through the surgery (having done it once at 5 days, again at 3 months, and recently at 2 years) - but just remember to love your child and touch your child and pray as much as you can, surrounding yourself with supportive family and friends.

I'll keep you in my prayers. I'm having my second child in 3 weeks - no heart problems - but I sure remember what you're going through. Feel free to contact me back directly if there's anything I can help with.

A.

Hi, I decided to write because my son had heart surgery at Childrens almost 9 years ago. He was 5 1/2 months but tiny...only 11 lbs!! So my situation was a bit different but I did want to say that our experience at Childrens was all positive. we too met with the surgeon which was helpful for us. The day of the surgery is tough...but a nurse kept coming out to keep us informed and check on us and so it went fast. It is also tough to see them after the surgery but again, I was amazed at my son's quick recovery. Good luck! Keep in mind that these surgeons have done it all and your baby is in good hands.

Hi! Good for you for wanting to breastfeed so strongly. I'm assuming that it's the heart defect that is promting the c-section and they don't think the baby can handle a vaginal delivery, yes? So here are my thoughts:
First, 5 minutes isn't going to make or break any further procedure, so talk to everyone around you and try to make sure that they bring your baby (bloody mess and all) around the curtain to you for a kiss and a hug and a "welcome to the world" before whisking her away for everything else.
Second, I have read that babies can be fed colostrum through a tube just as easily as anything else, so start pumping before you even have her and try to get as much as possible stored to take to the hospital with you. It will be better for her than hospital fluids any how! If you (or they) are worried about nipple stimulation, don't be, it usually takes 2-3 one-hour sessions of pumping to induce contractions and labor. If all you are doing is pumping for 15 minutes a few times a day, you won't get a lot, but the baby doesn't take much in the beginning and every bit helps. You can continue to pump as much as you want after delivery.
Third, do insist that you be able to breastfeed as soon as possible. I'd do some research in to the disease and surgery and how it can affect and also be affected by bfing.

Try to relax about it all. Stressing about it all can only make matters worse. Just look at the bright side - if she's already used to a bottle, you can leave her with a sitter and expressed milk (something we never did get my son to do).