Verdict from London this time was...

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Hazel is doing amazing!!!

When the doctor came in to do her check up, he began by asking us how things were going, while he was looking over her chart. No real eye contact was made for the first few seconds of the appointment, not really getting a good look at Hazel. Just as he was asking about how much weight she had gained, while simultaneously looking at the chart to check, his head turned in a way we could only see the side profile of his face. We could subtly detect the beginning of the huge grin that was about to land on his face. Then he looked up and made eye contact...it was then that we saw a big ol' teeth baring, head nodding, hands clapped together look on his face that could only express his pure and utter amazement with our baby girl.

He was astounded by the rapid weight gain, going from 11 lbs 8 oz before her surgery to 15 lbs 14 oz just 8 weeks later. That is a 4 lbs 6 oz gain, which is 40% of her entire body weight pre-surgery. She is now in the 90th percentile for both weight and height. A long ways away from the 10th percentile she was in before. It was evident then, that all the effort and focus she has been putting into eating has paid off (and girl can eat!!!).

Going through the experience of the VSD surgery was the most difficult thing we have had to deal with as parents (so far). We have had so many challenges, so early on in our role as parents. It would have been nice to be able to be a little more seasoned, a little less green while dealing with all of these arduous tasks. It's a good thing that Hazel doesn't have a check list in her journal that she uses to compare us to other parents she comes across. That being said, we could not be happier with the results, and would do it again in a second if it meant that Hazel would be this content and happy afterwards.

What a relief...the doctor is not worried...we are not worried...amen!!!

We even had time to stop in to NICU and visit Auntie Cheryl. They were both delighted to see each other. Smiles all around....yes...even from Hazel.

 

VSD Q & A

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Back by popular demand...

VSD
 

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.

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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!!!!

 

Hazel Laughing Video

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If this doesn't make you laugh, or at the very least bring a smile to your face, I will quit writing the blog!!! For us, there isn't a sweeter sound. No harp, or birds singing, or babbling brooks, or ocean waves...NOTHING is better than this sound. So pure and innocent and simple. Our new favorite thing to do at home is try anything and everything that will make Hazel do this...

Hazel Tries Rice Cereal

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Well, we finally started Hazel on solids. She's a natural...that or she was starving. When we last took her to the doctor she had gained a whole pound in 7 days. She is now 13 lbs 13 oz!!! Could be more now since this data is a week old. She feels heavier every morning when I pick her up!!! We aren't sure if she likes it or hates it, but the key is...she eats it. I think she is undecided. The look on her face is priceless. Its almost like she is just entertaining the idea of it out of pure curiosity. You can almost see her thinking...hmmmmm the taste of this isn't terrible, consistency not to bad...well here I go...num num num!!! I think she was equally intrigued by the spoon itself. She tries to grab it and guide it into her mouth. Her daddy and I were very surprised that for the first time eating she actually swallowed 90% of it. A good 10% ended up on her face and surrounding area. Very good Hazel...I can't wait to see what she does when she actually likes the taste of something!!!

I think she got confused as to what she was supposed to be eating...

You want the truth right???

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Hazel has not been sleeping well since her surgery...so, needless to say, we have not been sleeping since her surgery either! Last night, like many other nights, Hazel was up at 3:30am. So, mommy was up at 3:30am. I am not going to try and paint a pretty picture, portraying me as this patient, all loving, selfless women that lives and breathes only to serve her child...so of course I feel guilty about that.

I am not going to pretend that by 6:30 am I wasn't looking up flights to New York (just because the thought of an empty hotel room seemed like the most peaceful place inside four walls at that moment). I am not going to pretend that I wasn't giving Hazel her bottle while my head was resting on my pillow, with only one eye open to see if the bottle was actually hitting the target area. I am especially not going to pretend that I didn't call my mother at least 20 times from 7 am to 9 am to see if she could come and relieve me so I could close my eyes, if only for a few minutes. I may or may not have taken a nap with Hazel's sleep sheep on full blast next to my head so that if she cried it wouldn't disturb me (that's what her Nonna was here for). When my dear friend came by to drop off some icy treats, I may have, most likely, not brushed my teeth or changed my pajamas's...it was 4 o'clock. I may have gotten a text from my husband wondering if by 5 o'clock I would still be home or in NYC? Don't judge me...I know most of you read along nodding in understanding, remembering and reliving those precious moments that you have all had.

I love my kid but sometimes sleep trumps love. Trust me I know there are people out there who have it worse, but I did ask if you wanted the truth. My truth...just for today...that was the truth.

In other news...Hazel is a huge piggy and ate a whole cube of sweet potatoes. Pretty ridiculous for the first time eating them. We bonded over a lovely meal, followed by some lovely milk made just for her, and then snuggles for daddy.

Good Night...

 

What to Expect for Your Child's VSD Surgery

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Here is what we experienced during and after our daughters VSD surgery in Toronto at Sick Kids Hospital. I just want to make a note that this was our experience and may not necessarily be yours. I know that I have some readers that may find themselves having a similar surgery at the same hospital, so this is mainly for you and your little ones. First, the surgeons and the surgical teams are great at their jobs. That said, we found that some do not have great bed side manner. Meaning you may not feel warm and fuzzy throughout the process. What you may feel is that they are there to get the job done, done well and done quickly. We felt that it was more of a production line or revolving door of patients who are in need. We do understand that Sick Kids is a place that is very much in demand and sought after in order to help many kids that are in need and they do their best to help as many as possible. It's just that this quick turn around leaves little time for pleasantries. Those of you who stayed in London, might not experience that same love from the staff at Sick Kids. However, again they are great at getting the job done, which is the most important part.

Hazel was in the Cardiac Critical Care Unit for Day 1 and Day 2 after surgery where she had one-on-one care from excellent nurses. Again, no warm and fuzzy feeling from them, but they did their jobs well and made sure Hazel was stable post op. When we saw her for the first time she was really drugged up and out of it. She had a central line in her neck, an IV in her foot, ventilation tube in her mouth, a feeding tube in her nose, two drainage tubes in her chest, plus the big scar. All of this the nurse will go over with you in the Pre-Op apt a couple of days before.

On Day 3 and Day 4, Hazel then went into a private room on the floor. Here is where things got more difficult. The care is no longer one-to-one, so we could never leave Hazel's side. One of us had to be there always, which got tricky because there really is only room for one parent to sleep on the couch (they will pull a cot in for you for the second parent if you want). We were staying at the Ronald McDonald House which 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. 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 might 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.

Physically, Hazel was still in a lot of pain. Here is where you really have to advocate for your child. You know them best and the nurses are pretty good about listening to your needs. Since Hazel was on Morphine and Tylenol for her pain, she experienced trouble with her bowels. The nurses put her on PEG, a stool softener. She was also on Lasiks to help her eliminate fluids, which babies can retain after being on bypass and having surgery. She did need a blood transfusion in the operation which is very common for this type of surgery.

At discharge on Day 5 from the hospital, Hazel was on Tylenol for pain, Advil for the infusion around her heart (also normal after surgery and it corrected itself in about a week), PEG, and Lasiks. Once home, Hazel appeared to be more uncomfortable. She was crying non-stop and was inconsolable at times. Bringing her to the pediatrician and calling London, we figured out that Sick Kids did not give her the appropriate dosage of Tylenol or Advil. Also, we were given morphine to help her as well. It helped a little bit but still she was in a lot of pain. A trip to the ER in Windsor, were she had x-rays done, showed that she DID NOT have blockage in her bowels and therefore the PEG was having the adverse affect on her, causing her great discomfort. For us, this pain was the worst of it. We didn't expect her to be like this at home so it was a shock. Come to find out that Sick Kids may have told us to keep giving her the PEG just because sometime kids with Down Syndrome have problems with their bowels. Fair enough, but Hazel is not one of those kids. We may have avoided some undue pain for our daughter had they simply asked us if she was one of those kids or not.

So here is where I caution you, especially if your child has Down Syndrome. ALL kids with Down Syndrome are NOT the same and I feel that the medical profession sometimes thinks that they are (I believe that this probably happens with all children, even those who do not have T21). If I could go back and do it again I would ask tons of questions. Why should my daughter take this? Could you be generalizing because she has T 21? Just beware, you know your child the best and don't assume the nurses and doctors know that your child needs something just based on them having T 21.

Just to be clear I am in no way saying that Sick Kids can't and won't get the job done well. We are very thankful for the work they did to help Hazel and will be forever grateful for helping put her heart issue behind us.  I am saying that taking the team approach to healing seemed to work the best. Their suggestions, based on your knowledge is a great strategy to helping your little one heal. Don't forget to ask questions!!! If there are any questions I can answer, leave a comment on the blog or e-mail me and I will try to answer with the knowledge we gained from our own experiences.

Hazel has never been better and the surgery helped her so much with feeding, breathing and general comfort. She is much more relaxed and happy since the hole has been fixed. The scar healed fast and really didn't cause her too much pain. However, she has had a hard time sleeping for long periods of time at night since we have been home. She is like  newborn again. Sleeping for a few hours and waking to eat or with sore tummy. Not sure if this is normal behaviour after a surgery, but it has proven to be challenging for all of us. I thought we were done with the newborn stage!!!

Hopefully this information is helpful to anyone who may find themselves in a similar situation as our family. Good luck to anyone who may have to undergo such a surgery, or who knows a loved one who will. The procedure is straight forward and Sick Kids does it right!!!

VSD Update from the Bosses in London

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The verdict is in...

Hazel is PERFECTLY HEALTHY!!!! YAY!!!! YAY!!!! YAY!!!!!

Hazel has put on a whole pound since her surgery and is now 24 inches long. She enjoys eating now and often her legs and arms start rapidly swinging and kicking when she sees that the bottle is in view. We have noticed that she is not as fatigued as she was in the past. Lucky for mommy and daddy, Hazel doesn't take as many naps as before...uh oh!!! She, also, seems genuinely more comfortable and less irritable. The change is wonderful and nice to see after the crazy two weeks we have just entertained.

In terms of her heart, it is perfect. There are no leaks from the hole, no swelling or water retention around her heart. Her chest x-ray was the best the docs in London have seen in a while. They were very pleased that she got the surgery done and over with so fast and that we can all move on with our lives. We have been able to take her off her diuretic medication and she no longer has to have fortified breast milk. We are excited to start her on solids soon. Moving forward, we only go for check ups in London every 6 weeks and those visits will be lengthened in time. I will do a recap of the surgery and what to expect after for those readers who may be facing a similar surgery in the future.

We are so excited to move forward and are excited for what the future will bring. Even though it will bring more challenges, we don't know what or when those will be. Right now, in the present moment, we just live. That thought is liberating. Now we can just grow together. The next time I leave this house with a bag packed you can guarantee that it is NOT going to be to go to another Ronald MacDonald House!!!

It was fantastic to see one of the nurses, Marie, from when Hazel was in the NICU. It was really nice of her to come and catch up with us even though she wasn't working. She will always hold a special place in our hearts for all that she did for Hazel while we could do nothing.

 

Hazel Post VSD Update

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Hazel has finally started to feel a little bit more like herself these last few days. Thank goodness!!! She is almost back to being a smiley, happy, content little baby who likes to play with elephant and chew on her blankets. She has started to be comfortable rolling from side to side, however not quite well enough to roll onto her stomach. She has rolled a couple of times, but I think she has figured out that that hurts a bit so she doesn't do it anymore. At least she stays put for a little while now! Her stomach is still upset most of the time, she is still really gassy, so hopefully that will work itself out soon.

I have taken some pictures of the only activity that takes her mind off her pain. Being outside. So, several times a day (when it is cool enough) we go walking in the backyard so that she can grab the plants and flowers that are growing there. Hazel is absolutely enthralled by the greenery. First, she reaches out with her hands, then both her feet, and eventually she tries to pull the leaves off and get them into her mouth!!! I love watching her do it...she is totally focused the whole time.

See...she is trying to be happy!!!

Home Sweet Home...Again

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We are finally home with Hazel (after having her VSD repair), from what seemed like a nightmare that was never going to end. She is still not 100% which is very difficult for all three of us. The best way I can describe it is, we feel like first time parents that have just brought their newborn home. Except our newborn has had open heart surgery, where there is a 6 to 8 inch incision on her chest, that bares wounds under it that only she can feel. We aren't quite sure what she is crying about, when she is crying. It's either her incision hurts, her teeth, her belly, her bum, shes hungry, she's tired...it's so hard to tell. So, we just go through the list and try to keep her as comfortable as possible. It is very difficult to console her when it is impossible to pick her up and snuggle her without it being uncomfortable for her. I thought the hospital stay was the hardest part but turns out, this is worse.

There are no words for how hard it is to look at your little baby, who is normally so happy and content, see the utter despair in her face and not be able to fix it for her. It breaks my heart to think that she is in pain and we can't do anything to make it go away. I am convinced that this is one of the hardest experiences in the world to face.

The good news is that we are in the comfort of our own home...I am not going to pretend that I didn't panic and take her to the peadiatrition today...but we are HOME!!! The other bit of positivity that I can share about all this, is that Hazel after a 2 hour crying fit, finally snapped out of it long enough to look up at me and actually laugh out loud. I didn't know whether to start crying myself or laugh along with her...so I laughed along with her!!!

Here is Hazel's reunion with Elephant. We brought Cow with us to Toronto, but you could just tell that Cow could not take the place of Elephant. Daddy held Elephant up for Hazel today and she immediately got this look of love in her eyes and smiled big. Then she began to tell her painstaking tale to her long lost friend...

 

Post VSD Surgery Day 4 - Battle Bowel

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Hazel had a rough night last night due to her bowels being backed up. All the drugs have certainly taken a toll on her little body. She barely slept and was pretty much inconsolable all night. It made for a long, sleepless, tearful (hers and mine) night. Nothing worse than not being able to fix your baby when they are broken. Today, however, Hazel has had a great day! She seems to be feeling more like herself, offering daddy a smile FINALLY!! First time since I passed her to the anesthetist who took her into the OR. She had her Eco this morning and the results came back fine. She needs time to heal but there is no reason to believe that the surgery wasn't success. She has some inflammation around the sac of her heart but that will repair over time with some help from anti inflammatory. Very normal with this type of surgery.

So we continue to work on her tummy. Once it is in order we can go home. YAY!!! Tomorrow should be the day. Can't wait to have her back in her own crib.

Post VSD Surgery Day 3- The nurses had a plan...

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Well we all know how Hazel likes when the nurses have "a plan"!!! I came in this morning for my shift at the bedside with Hazel, after her daddy spent all night with her, to find that she had kicked out the IV line in her foot, so it could no longer be used. The nurses came in and had to take out that IV line right away. And because Hazel loves having people poke and prod her, she immediately went into quite a state of rage. To give you a good idea of what this scenario looked like, it was myself and 2 nurses holding Hazel down. Again, she must have forgotten that she had Down Syndrome. Once completed with that task, they looked at the central line that was in her neck, as they needed to take more blood. Somehow, Miss Hazel, had pulled that one out as well!!! So they had no choice but to take that one out too. Hazel continued kicking and screaming the whole time.

On the way out the door the nurse looked at me and said, "well...I did have a plan when I started my shift, and that wasn't it!!" Ahhhhh, that's where she went wrong. Hazel doesn't do "plans"!!!

Needless to say, Hazel's IV lines have been pulled, one step closer to going home. Her pacing wires are also out, because why not? All her medications have been reduced and after her Echo tomorrow, they will see if she is ready to be discharged. Hoping all goes well and we will be over this hurdle soon too.

Post VSD Surgery Day 2

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Hazel, in her true form, is doing remarkably well for being out of surgery for only two days. Today she was put in her own room where she will continue to rest and eat until she is strong enough to come home. We have heard repeatedly that she is doing amazing from all the staff here. She is eating regularly, although is still pretty tired. She has lost almost all her extra wires and tubes. She still has to lose a couple of IV lines that are just there as a precaution and her pace maker wires. If all goes well maybe she will be wire free by tomorrow sometime. She wouldn't tolerate a feeding tube even for a couple of hours. Flash backs from London. I gotta say I was pretty pleased about that!!! In order to get home, Hazel has to continue to eat and breathe on her own, seems simple! For now, she is sleeping a lot because of all the drugs, which is exactly what she needs to do to heal. We are giving her time to do her thing, as we fully trust that she knows what is best for her and is capable of delivering. She makes this experience so much easier for us to bare because she handles it with such grace and determination. Here we are again and I can not stop myself from thinking that she is the strongest person I know. Bless her heart (pun intended).

Is there a more perfect match than this???

Post VSD Surgery Day 1

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Hazel is doing well. The surgery went as expected with a VSD repair and a small resection of muscle growth on the right side of her heart. No complications arose while she was in surgery. Everything went according to plan. Her heart is beating regularly and  will be closely monitored for the next few days. The surgeon couldn't have been more bored while describing the details of the surgery. We couldn't have been happier about his boredom! Hazel is resting in the ICU. She had a slight fever last night, which is normal for this kind of surgery. It has since stabilized. They have discontinued the morphine drip to allow her to be more alert and start to eat. She is moving and kicking constantly and is tied down to the bed for her own safety. If we did this at home someone would call child services on us! She may be moved to a ward room soon as her demands for care decrease.

For now we are just giving her time to heal and rest. Lots of kisses for now!!! Thanks again for the prayers and support.

Day 3 and 4-When in Toronto...

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Well when life gives you lemons... Since we are in Toronto anyway, and almost our entire families are here as well, we decided to take in a few sights, do a little shopping and have a few meals on a patio or two. Hazel is always making excuses for us to stop and enjoy the present moment and this has been no different. Although there is a very serious surgery coming tomorrow, today we have a whole day to embrace our friends and families and enjoy that they have all taken time out of their busy lives to be right by her side and support her ever step of the way. Between having a huge support system present and all the thoughts and prayers of our readers, Hazel should be all set!!!!

A funny story...

We were at a Chinese restaurant having some Dim Sum, of course, we had Hazel with us. She was a very good girl who spent most of the time sleeping. Towards the end of the meal she woke up and we took her out of the bassinet just as the little old Chinese waiter came to clear the table. He looked at Hazel, then at Matt and I, then back at Hazel. This went on for longer then was appropriate and you could tell, something wasn't adding up for him. So he says, "Oh she is so cute!! She looks like she could be Chinese!!!" Then he looked at us as if we needed to give him an explanation. So then in all my infinite wisdom I say, "Nope, that's just the Down Syndrome!!!" We all shared a laugh, although I am still not quite sure he understood what I was saying.

...hey make lemonade!!!!

 

The pic above is of Hazel's Entourage today in Toronto!

Day 2

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Today was another long day for Hazel. Several tests and meetings to prepare for surgery on Wednesday. She handled it all with more grace than any adult I know. One of the many reasons she is my hero. Please keep the prayers and positive energy coming our way...she is just beginning. Your daily comments on the blog are such a huge help and support to us. It is so heartwarming to read all the wonderful thoughts that are out there for Hazel. When I check before bed and all the comments are there, I feel I can rest a little easier knowing that your prayers are with us. Keep the comments coming!!! Here is a picture of Hazel immediately after she woke up from sedation, when she saw her daddy...she never stops smiling!!!

Zia Bianca and Gabriel met us for some dim sum after a busy day.