Upcoming AV Canal Surgery

[dannysmom]

Hi I am new to this site (this is my first post) my son was born in June with DS and requires surgery to repair his AV Canal defect. My husband and I sooo nervous and don't know what to do. We love him so much and can't bear the thought of open heart surgery. It is scheduled for Aug 4th at Boston Children's hospital. Any advice or success stories would be greatly appreciated.

Thanks, Lisa (mom to Elayna 2 1/2 and
Daniel 2 months)

[momofrussell]

Well, I can't help on the AV Canal surgery at all, but I wanted to welcome you to Unomas!
There are plenty of wonderful parents here that can help out with the AV stuff though!

Good luck with the surgery and WELCOME! Post up when you can and share more about you new precious peanut!

A.

[Valerie]

Hi, Lisa, Welcome!

Nicholas also has AV canal defect. He couldn't gain enough weight to have the surgery at an early age, they had to do a pulmonary artery banding surgery at 3 mos old to slow the blood flow to the lungs so he could breath better and eat better. After that, he did so well, they waited until he was 21 mos old to do the heart surgery, that was this past January.

I know exactly what you mean about being nervous! It was something you dreaded, yet at the same time wished it would be here already so you could get it over with. And the doctors act like it's all so routine, which it is to them! It's not their child!

Anyway, I can tell you Nicholas came through both surgeries with flying colors! The first one, he was in the hospital for 3 days, the second one, 1 wk, but was in the toy room playing by day 3!! ;D ;D

Day 2 was our worse day. They still wanted him to be pretty still, and he was ready to move! They were giving him Morphine, which I think had an opposite effect on him. Made him really agitated and itched like crazy! So they stopped the morphine, and mostly gave him Tylenol, with just a couple doses of Lortab thrown in. And he did great with that.

When they come out of surgery, they will be hooked up to everything imaginable, but all that starts coming off rapidly, and most everything is off within 24 hrs.

Anyway, he did really great, and I'm sure Daniel will, too. I also know nothing I say will totally relieve all your anxiety! Trust me, I understand!

Let me know if you want to know anything else or have any specific questions!

[dannysmom]

Glad to hear your son is doing well!! The doctors do make it seem so routine...but like you said..when it is your child it doesn't seem routine at all. It seems overwhelming when I think about it. I don't know how I am going to hand him over to doctors so then can work on his heart. I am still in shock over this whole thing.

This all takes so much getting used to. I didn't know I was going to have a son with DS. My prenatal tests did not show anything wrong..so we were shocked. My husband didn't know what DS meant and fainted in the delivery room ( ( had a c section so I didn't know what was going on). He thought the baby was going to die right then and there. But now that we are catching our breath..it is all sinking in. I am hoping once the heart surgery is over, we can finally have that joyful moment we lost in the delivery room. I mean we are thrilled to have our son, but the shock of DS along with major heart defect was alot to take in.

On a brighter note, he has no other difficulties at this time. He latched right onto breast feeding and the bottle. He is slow to feed but drinks about 15 ounces a day (we fortify the milk with formula and polycose to add calories). He rarely spits up if ever. He is a sleepy baby but is already holding his head steady at only 7 weeks. We have even had a few smiles.

I know this all takes alot of getting used to. I love this site because so many of my feelings have been written about by other moms. Thanks for the support and I look forward to chatting more.

[donnita]

Welcome to UnoMas Lisa!
Cassandra had her AV Canal repaired at 6 months of age. Her heart defect wasn't found until her one month check up. She was in the hospital for 8 days total and recovered very quickly. The "other side" of the surgery is much easier and I am sure you will have many joyous moments even before Daniel comes home from the hospital. Cassandra is 4 years old now.

[hannahph]

Hi Lisa, congratulations! I had to reply to you because your situation is similar to ours. Our daughter had Av canal and VSD repair at seven weeks old. She too had her surgey at Boston Children's hospital. As far as I am concerned they are an amazing hospital and I would go back there in minute. They are so good at what they do. Hannah was in severe congestive heart failure before her surgery. I believe she would not have lived another day had she not had her surgey when she did. Her surgery took about five hours and the staff was so good about keeping us updated. They would have someone come and tell us updates ever so often like , : she is on the heart/lung bipass machine now and doing well. I never understood the term Lump in your throat before until that day, I was so stressed and worried that I felt like I couldn't even swallow my own saliva. Once the surgery was over she was in ICU for like a day and a half and then in a regular room on the cardiac floor for four days and then home. She was a totally diff. baby after. She stopped looking blue and ate more than she ever had before. Her recovery was so quick and she healed well. She is now almost seven years old and has no lasting effects except for a small leakage from her mitro valve. She is on no meds and has no restrictions. It is so scary at the time but now it is such a distant memory. You will soon have this all behind you too. Our surgeon was Dr. John Mayer and he was amazing. Feel free to email me if you have any questions I can answer for you. [e-mail] . I will be thinking of you...Heather

[kellyds]

I know the fear, and I'll be thinking about you. Our little Joshua had VSD surgery last month, at 3 1/2 months old. He's doing beautifully.

Here are some pictures in case you think it might help to see post-surgery tubes, etc., before your little guy goes through it. Some are fairly graphic, so don't click if you will be bothered.

share.shutterfly.com/osi.jsp?i=EeANGTRkybuWrQjg

[dannysmom]

Heather,

Thank you so much for the reply. Dr Mayer is our surgeon too!! What a small world. We were very concerned about who was going to do the surgery but our cardiologist spoke very highly of him and now to hear from you...puts me at a little more ease. The surgery is scheduled for Aug 4th so it is right around the corner. I am dreading the day but at the same time looking forward to it. My son is doing very well but tires so easily after feedings. He has never turned blue but I can tell he is getting a bit weaker. He used to suck with more force than he does now. I used to get 16 sometimes 17 ounces..but lately I have had some 12 and 13 ounce days. I can't wait to have the surgery to see how strong he hopefully will be. It is so nice to hear that your daughter is doing so well. You said you were home in 5 days? I hope we are too. My daughter is 2 1/2 and it is going to be difficult to be without her for so long (my mom will be taking care of her). Thank you so much for taking the time to reply. It is comforting knowing others have been through this. My husband and I sometimes feel so alone because we know no one else in our situtation. I didn't know until I had my son that he had DS and a heart defect. It has been alot to handle but we are doing our best. Thank you again, I really appreciate the feedback.

[dannysmom]

Kelly,

Wow mom of six!! You must be busy. I have 2 but sometimes my daughter who is 2 1/2 talks so much I feel like I have 6!! Thank you for sharing the pictures. My husband and I don't know what to expect and it does help to see it. Your son looks so healthy and happy, it is nice to see. Thank yo for sharing them with us.

[Valerie]

Lisa, we didn't know about the heart condition or DS until after, either, so I know what you mean. We found out about the heart at around 7 wks, and they suspected DS then because of the type of defect, but didn't have an actual diagnosis until his surgery at 3 mos.

He was also a sleepy baby, and I remember just getting him out of bed a couple times a night to feed him, he'd eat without waking up, and actually ate better while he was asleep for some reason!

Anyway, since you said Kelly's pics made you feel better, I thought I'd share some recovery pics with you.

First one is 2 days after surgery, got a smile!!


Second one is 3 days after surgery, playing in the toy room. There was another couple there whose daughter was having heart surgery the next morning, and they kept telling us over and over how much better they felt seeing him playing and having a good time!



The last one is the morning we were getting ready to go home. He was definitly happy there! ;D

[kristin]

Hi, Lisa! Our son, Cole had AV Canal defect repaired at 4 1/2 mos. It was a very nerve wracking time, and we too, were very nervous, but we realized that we had no choice about the surgery because he wouldn't have lived very long without it. Not that that made it any easier to hand him over to the doctors, but we knew that he was in the best of hands. We are in Denver area, so I don't know anything about the Boston Hospital, but I am sure they are terrific. Ask lots of questions, even if they seem "stupid", so you will be as prepared as you can be. That seems to make it a little easier to get through. Cole is now three years old, and approaching 36 lbs. ; he has had no side effects from the surgery and his heart is virtually "normal", for which we are so grateful. We have another little boy in our support group that had a VSD/ASD repair, and he came through with flying colors, too. The doctors all told us that for some reason, these kids with DS tend to do better than kids without DS in these surgeries, which is really good news! We will be thinking of you on the fourth of Aug. and praying for a swift recovery.

[dannysmom]

Thank you so much for the support. I feel so much better tonight hearing of your success stories. I just keep praying that he makes it through and it is a success. I have learned so much over the last 7 weeks, it is a bit overwhelming but at the same time I feel blessed to have such a beautiful son. I can't wait until this surgery is over so we can begin enjoying him more and more. We try to make every day a good one...but we really can't go out and do too much because we are afraid of him getting sick before surgery.
Thank you again for the feedback.

[samanthajosmom_12]

hi. samantha jo my daughter has this av surgery at four months old and did really good with the surgery. she gained a pound before she left the hospital to go home. she stayed in 8 days i think. i was glad to have it done and she is doing great. she is now 4 1/2 yrs old now. alittle torpedo we call her. sue

[nica1]

Lisa hi, welcome!!! Adam had complete av canal heart surgery at 2 1/2 months old. he was only 5 lbs. at the time. They wanted to wait till he was 6 mnths but he just wasn't gaining any weight and had no energy. He was only in the hospital 7 days after surgery and began to gain weight right away!!!!! And was so much more alert. He is now 6 yr. old and you would never guess he had heart surgery. He is on the run all day:) And has been very healthy We will keep you in our prayers, best of luck take care, Monica

[CC]

WELCOME to UNO

and

many many PRAYERS going out from NJ that all goes well with the surgery

PLEASE post up as soon as you can that ALL went well

CC ~