Joshua's Heart Surgery is May 26

[kellyds]

Joshua is ten weeks old now. He'll be having his VSD repaired on May 26. He seems so HEALTHY. He has been gaining weight (although he still weighs less than nine pounds). He smiles and coos. He bats at the toys that I hang above him. The only thing is that he gets pretty short of breath. The cardiologist said his VSD has "stretched" to 7 mm, so it is time to get it fixed.

Who else's child has had this done and is there anything we should know? Anything you would have done differently? Any surprises we should be prepared for? Anything special to bring with us? (The hospital is a two-hour drive away and we'll be staying at a Ronald McDonald House.)

Here's Joshua, playing with his toys.

www.babiesonline.com/imagegallery/gallery_image.asp?p=%2Fbabies%2Fd%2Fdavenkelly%2F3808779%2Ejpg&be=d/davenkelly

[sharen]

My prayers will be going out to Joshua. Im sorry I don't have any input on the surgery , That was one thing Jordan didn't have. What Hospital will you be going to??
He is so cute, and seems very advanced. Keep us posted.

Hugs to Joshua
Sharen

[Valerie]

Nicholas had atrioventricular canal defect. He didn't gain enough weight to repair it when he was little, he had to have a PA banding at 3 mos, then they just did the repair this past Jan when he was 21 mos old. I could tell you to try not to worry, but that's useless. I was a nervous wreck, even though everyone kept saying these surgeries have a really high success rate and all would be good. And all was good! I'm so releived to have it behind me, you won't believe what a load off your shoulders it is when it's over!

This last surgery, he was older, so we probably took some different things than you will. But we took his blanket that he always sleeps with, some of his favorite toys, CHEERIOS ( ;D) and we took his CD player because he LOVES music. And he played it all the time. We were there for a week. The day after surgery was the worst, because he wanted to get up and they still didn't want him to. He screamed and thrashed for 6 hrs straight. Things got MUCH better after that. By the 3rd day he was in the toy room playing!

The first surgery, at 3 mos, we took a couple books that he liked, a couple toys, and his blankie. He was never a passifier baby, but after that surgery, before he could eat, they dipped one in sugar water and he sucked on that for 2 hrs.

This isn't to scare you, just something to maybe watch for. The day of his first surgery, around midnight, he stopped breathing and his heart rate dropped. They had to give him Narcan to rid his body of the narcotics and he was fine within seconds, although he didn't have ANY pain control then. We were told that sometimes babies with DS store the Fentynal in their fat cells, and then dump it all at once causing an overdose. For the second surgery, they made sure he was off the Fentynl before they took him off the ventilator.

I could really write a book for you, because this is all so fresh in my mind, still. I guess just know that when you first see him after the surgery, he's going to have SO MUCH hooked up to him. Some people take that better than others. For me, it didn't bother me much, because I was just glad to see him and that the surgery was OVER!!

I'm sure Joshua will come through with flying colors! Prayers are with you. It'll be behind you soon, and then you can just enjoy your son!! Keep us updated!

I'm thinking I went on for too long, but if you have any more questions, just ask, or you can PM me!

[christie]

Awwwww JOSHUA is just PRECIOUS ;D

Many BLESSINGS going out from New Jersey for you all from now and till you post up ALL is well



CC ~

[Emilysmom]

Loved the pic! He will definitely be in my prayers on May 26th.

Susan

[ALLISA]

Hi Kelly,

it's been awhile since Erin's surgery, but I thought I'd chime in. Erin had TOF and it was repaired at 3 months of age.....she wouldn't gain weight for anything which is why they put the surgery off as long as they did. They wanted her to be 10 pounds....but finally at 7 pounds they did it.

It's very overwhelming, but have faith in the doctors, they do this all the time & not to mininimze open heart surgery, but to them it is a daily routine....to us moms, it is heart wrenching !

I remember bringing in her own blankie from her crib & her mobile to be a little more familiar & friendly. The hospital didn't mind at all. Defintitely bring reading material or something for yourself.....daytime tv is horrendous & little baby will just be sleeping most of the time.

Someone here at Uno had suggested to me that we take a picture of Erin post-surgery with all her tubes & wires......I know it seems weird.....but after you get used to the initial shock of all the wires, etc hooked up to him....you don't mind them & it will be something to show her when she is adult......"look at what you did, how strong you were and what a fighter". I have never shared the photos with anyone else.....they are just for her if ever I think she may want to see them.

Also.....I wanted to say I was pleasantly surprised at how she looked post surgery.....I was so afraid of this huge incision mark and would it look horrible and painful ?

I didn;t know WHAT to expect,,,,,,but man oh man......it was teeny, tiny, and as neat and clean as could be !! They stitched it up INSIDE.....so they were no visible stiches.....It looked like a healed scar, just bright red. That was a HUGE RELIEF to me !!

If I remember anything else I'll repost, in the meantime feel free to e-mail me if you have any more questions !

Best of luck & all of Uno will have you & Joshua in their thoughts !
Allisa

[e-mail]

[kristin]

We will keep Joshua in our prayers on May 26th! It is a scary time, but you will get through it... What Valerie said is what we were told too. For some reason, children with DS tend to do better than "typical" children in these repairs, so you definitely have the odds on your side! It might seem like one of the longest days of your life, so make sure you have some snacks and fluids close at hand (even though you probably won't feel like eating, it is important to keep yourself fed and hydrated, so you don't get run down and get sick, or pass out or something...)

At 4 1/2 mos. Cole had AV Canal defect repair (like Nicholas), so the surgery may be a little different than the VSD, but as far as what to expect, and again to reiterate Valerie.... he will be hooked up to sooo many tubes and wires; it can be a little alarming at first, but they get off of many of them within the first few hours of the surgery, so that is good.

Getting off of the ventilator is a nervous time -- we were in the room when they pulled Cole off, and I wish I hadn't been. His blood pressure skyrocketed and scared the nurses; they went into semi-panic mode, which scared us. It all turned out ok, but that was a time that really frightened me.

The other thing that I was glad to have heard about before our son's surgery was the "Chest Physical Therapy -- Chest P/T" that they have to do after the surgery. They actually take a little rubber tool, and pound (firmly, but lightly) on the chest and back to loosen any material that might be in the lungs (to prevent pneumonia). I was horrified to see the PT do this; it looked painful, after just being opened up, but was necessary to prevent complications from being under anesthesia for several hours.

I remember having so many questions before the surgery, and it was so helpful to talk to another family who had been through it. If there is anything you can think of that would help you prepare, please feel free to email or post again.

Good luck and we'll be praying for you.

[Chris]

Sarah had a AVSD, ASD, VSD and PDA repaired on her three month birthday. She was very ill from heart failure at that time. I think if Joshua is healthy, he will breeze through surgery.

The toughest part of the whole surgery experience is handing your baby over to take him to surgery. It is heartwrenching.
I can't describe how painful it was for me. Again, I think it would have been easier if she hadn't been so ill.

Wear comfortable clothes in layers. Hospitals can be very cold.

If you are nursing, find out where you can pump and where to store your breastmilk. I found it was easiest to bring my own breastpump when she was in a regular room. She was in a private room so I had plenty of privacy. I didn't want to leave her for 30 minutes to go pump.

I was able to go visit the PICU before her surgery and look at a baby who had just had heart surgery. It was shocking for me but it helped prepare me. It can be shocking to see your baby hooked up to so many machines.

Sarah had a very rough time coming off the respirator. She struggled for each breath and had horrible strider. Do not stay in the room when they are taking your baby off the vent. It is so scary.

Now for the good news. When Sarah had her repair, there was another little boy with Ds who had his repair the day after. He sailed through surgery and was home in four days! I was amazed at how well he did. He was off the vent the same day as his surgery.

If you knit, crochet or do cross stitch, bring it along. You will want to keep busy.

I'll keep Joshua in my prayers. I'm sure he will do very well.

Chris

[momofrussell]

Prayers and I hope all goes well with Joshua's heart surgery. Sounds like he doing really well with the weight gain!

Keep us posted!

HUGS!

a.

[uksteve]

Josh - good luck from Stan. I had mine 3 years ago. Now look at me! All the best