Back by popular demand...
I have put together a post with some of the questions my readers have about what a VSD is and the VSD surgery that Hazel had at Sick Kids. I can only answer based on our personal experience, I hope it helps to ease stress and make the transition easier before and after your child's surgery.
1. What is a VSD?
According to A.D.A.M. Medical Encyclopedia, Ventricular Septal Defect describes one or more holes in the wall that separates the right and left ventricles of the heart. Ventricular septal defect is one of the most common congenital (present from birth) heart defects. It may occur by itself or with other congenital diseases (PubMed Health). You can read more about the symptoms and causes here, here and here. This is the heart defect that Hazel had.
2. Are babies with Trisomy 21 the only babies that have VSDs?
No. Not only babies with Down Syndrome can have VSDs, although the occurrence is higher amoung those with Trisomy 21. Actually, the most common congenial heart defect for those with Down Syndrome are AVSDs. Children with Down syndrome are at a much higher risk for congenital heart disease. The incidence of congenital heart disease in the general population is 0.8 percent. The incidence of congenital heart disease in children with Down syndrome is between 40-60 percent. Read more on the National Association of Child Development website.
If you have not read the posts that I have done so far, feel free to get more information specifically about Hazel's surgery here. I will say again that this was our experience and may not necessarily be yours. Good luck!!!
These next questions were not addressed in the last post so here they are now...
3. For the days of pre-op appointments, how long did those take?
Our Pre-op appointments were all in one day. Her surgery was scheduled on the Wednesday and our pre-op was on the Monday. We were sent a detailed package about where and when to be at the hospital, including an itinerary of all the doctors we needed to meet and tests we needed to do. Sick Kids was great about accommodating the fact that we lived out of town and tried their best to get us appointments so we wouldn't have to go back and fourth too many times.
In our case, we started with a sedated Eco cardiogram (that Hazel had to fast for - 4 hrs for breast milk feeding). Followed by blood tests, x-ray, and several meetings with doctors and nurses who explain the steps and the risks of the surgery, scary but informative. The x-ray was shocking. A picture of what it looks like, which I found here...
The day was very long and tiring but it was nice to get it all done in one day.
4. While you waited for surgery did Hazel stay with you at RMH those nights, then was admitted the day of her surgery?
Yes. We all stayed at the RMH from the Sunday to the Thursday when she ended up having her surgery (it was postponed one day, which Sick Kids assured me often happens right up to the day of the surgery). They can provide cribs upon availability, but we brought her pack and play. The Ronald McDonald House is about a 5-7 minute walk from the hospital, in downtown TO. Not really safe to walk alone at night. Matt had to walk me back and we would have to make sure the nurses watched Hazel while we were gone. It was very difficult to leave her as the nurses were not one-to-one while she was on 4D. RMH is in a good location and very affordable ($15 per night). I hear they book up fast so we got lucky and were able to stay there. I would have a back up plan just in case. The Delta Chelsea is close by and offers rates for Sick Kids, also there is Super 8, I believe.
5. How did her feedings work? Was she kept relatively on the same schedule during the pre-op days, and then after surgery, how long was it until she was ready to bottle again?
Hazel was a difficult baby to put on a feeding schedule because of her fatigue while eating. Also, we were not at home so we tended to just go with the flow. When she was hungry she ate, when she was tired she slept (mostly in her stroller while we were walking around outside) and things went well that way for us. There is a great little street called Baldwin right down the street from the RMH. It offers great restaurants, with big patios, which were great for accommodating our stroller.
Hazel pulled her feeding tube out right away after surgery and it never went back in. She did not end up needing it at all. She was ready to bottle feed the day after her surgery. Before that she was on IV fluids to keep her from being dehydrated. The first time she ate she took about 2 oz. After that we just demand fed her. When she was hungry she ate and we never knew how much that was going to be. It was great having breast milk to use as it lasts longer once heated. The nurses were not concerned she wasn't taking in enough so the feeding tube was not needed. When we were discharged she still wasn't eating as much as she was but they were not concerned. It took her about a month at home to get back on to a consistent routine of eating. For us it was a long process to get her back to a schedule but we didn't try to push it at all. We let her be our guide.
6. What was the deal for visitors (aka non-parents?). Are any allowed or are they pretty strict? One thing I've heard from others is that sick kids is pretty different from London NICU Pod A?
Yes it is different from London. When Hazel was in the Critical Care Unit she was allowed to have one visitor at a time by the bedside, maybe two if only one parent goes in. The nurses are good about letting you know if the baby is up for a visit or not. Also, there are other babies in the same room. If one of them is having a procedure done they won't let anyone in, even the parents, at that time. This did happen to us while we were there and we were not allowed to see Hazel for a couple of hours. You have to call into the unit every time to want to go in so they can check to see if visiting is allowed.
When we got to our own room our families were all gone back home. I am not sure what the visiting policy is for 4D. I am sure visitors are allowed at this point as you are in your own private room. Also, you are allowed to take the baby out of the room (if they have the monitors detached) as long as you tell the nurses that you are doing so. Once you are in your own room, you can't leave your baby at all. They do not have one-to-one nurses at this point.
7. When you pump do they store / manage your milk (like London NICU did) or were you on your own for all that?
Pumping is like a dream at this hospital!!!! I thought I died and went to lactation, pumping, nipple heaven!!! Seriously, it's that good. Those of you who pump will fully be able to relate to this comment once you hear what I have to say. I know its hard to imagine that pumping can be enjoyable but bare with me...
First of all, the pumps they use are the best pumps on the market (Ameda) hospital grade pumps. In layman's terms they are the Cadillac of pumps, a smooth, even, built for comfort and luxury ride the whole time. Second, they provide all the pump kits for you at NO CHARGE. Fair seeing as how pumping is actually one of the worst ways to spend your time, and sometimes you have to pay to do it. Not cool!!! It's a good thing breast milk is priceless. Third, and by far the best thing about their system, is that they wash and sterilize all the pump kits for you. Yes...that's right...they clean and sterilize everything!!!! You just go get the pump and the kits whenever you are ready and drop them off when you are done. Then the little pump fairy comes and takes care of everything else (I imagine this fairy has huge boobs and enough breast milk at all times to feed an African village, if only she were real). The nurses take and store you milk. It is genius!!! Sometimes I had to wait for a pump but very rarely. You can pump by the bedside in the CCCU (ICU) but I don't think it is easy to find a pump. If you ask the nurses they will help you, or if you see a pump that no one is using in the hall claim it. That is what I did and no one took it from me. I just pulled the curtain and pumped in the unit next to her bed. Pump rooms are available on a first come first serve basis.
They have bottles and bottle warmers there for you to use as well. If your baby is on a specific bottle system that does not have a fairly standard nipple I would bring your own bottles. Hazel was fine with the hospital nipples so we just used all disposable ones. Cleaning bottles would have been tricky, but manageable if you have to, in the bathroom of your room.
Side note: When the nurse was explaining this pumping phenomenon to me at the pre-op appointment I couldn't believe it. I kept repeating over the course of the meeting, "So let me get this straight...you guys wash AND sterilize all the pump kits for me?" or "Like what do you mean, I don't have to buy any pump kits?" or "So...I just go pump and then leave all the stuff for the nurses?" Yeah, I think it is safe to say that she thought I was a complete idiot, with very little capacity for information retention!!!
8. Did Hazel just want to rest a lot and lay low? I know I read that she was not sleeping as well at night. What were her days like?
I want to express here that every baby is different and I can only speak on Hazel's behalf. Hazel did not know what she wanted after her surgery. Either that or we didn't know what she wanted?? She was very uncomfortable for about 4 weeks post surgery. The first two weeks were the hardest for us. She cried about 90% of the day.
She barely slept, day or night, and so neither did we. When she was awake she screamed in pain the whole time. Matt and I would take 15 minutes shifts holding her while she screamed trying the best we could to calm her down (sometimes it was impossible). When she did sleep it would be for very short times, about 45 minutes was the average during the day and maybe a full hour and a half at night. From talking to doctors and nurses, I think it is normal for babies to revert back to new born patterns of sleep because they forget how to console themselves briefly, and are in too much pain and discomfort to relax enough to get into a deep sleep. (Note: It does get better and they do learn how to self sooth again, even though while you are going through it, it doesn't feel like they will).
I remember countless walks outside, just in the backyard, to keep her calm and singing Adele's "Someone Like You", over and over and over again. That was the only song that worked. We did notice about week 3 she started to sleep a little longer and was happier for longer periods of time while awake. I don't remember how much she ate exactly but I know we just fed her when she seemed hungry. We tried 3 oz first and if she wanted more we gave her more. We just went with the flow, her appetite was pretty good but nothing compared to what it was before. Eventually she just started eating more and more.
That being said, I believe there are two unique reasons why Hazel had such a hard time with her recovery. First, the nurse practitioner in Toronto didn't prescribe the right dosages of Tylenol and Advil to her. Therefore, Hazel was in a lot more pain than she should have been. A quick call to our cardiologist practitioner in London and that problem was sorted out. My advice to you is to call there and ask what the schedule for pain medication should be so that you can get it sorted out right away and save your baby some pain. It doesn't hurt to have opinions from both hospitals.
Second, Hazel was on a stool softener because the medication for sedation and pain were causing a blockage in her bowels. We were sent home with instructions to keep her on this as long as we had to. Her stools were loose but we were not sure if the blockage had passed or not so we kept giving it to her. I didn't know at the time that babies with down syndrome sometimes have issues with their bowels. Hazel does not happen to be one of those children, and was essentially taking the medication for nothing. It was causing her severe discomfort along with a serious diaper rash. We brought her to the ER in Windsor and an x-ray showed that she did not have a blockage, just a lot of gas. About 5 days after discontinuing the stool softener, she was like a new baby.
I think what the most important thing to know is, you know your baby the best!!! You are the advocate for them and they need you in situations like this. Do not be afraid to ask questions and make sure all the medications given are necessary and in the right doses. If you don't feel comfortable with something, get clarification. Sick Kids was great about answering questions, but when we were there we didn't have any. They were also good about taking calls post discharge. Use the resources that are available.
Hopes this helps...Good luck with your little ones!!!!
