Like A Fish to Water

My Goodness! It's been a long time since I last posted anything! I do have to apologize as I know a lot of you have been checking regularly for updates. Turns out having two kids six months apart is a bit of a handful! Let's see if I can bring you up to speed. You may want to grab a snack as this is a pretty long post!

On January 22nd Cory and Molly & I all came home to Winnipeg. My Mom left Edmonton a few days before we did, and Lee left the day before we did. Lee drove through the night and was able to get home before Molly & me. He got the house all warmed up for us and had a few groceries in the fridge for our arrival. I think we can all agree that it was really, really great to finally be home! Molly & I were at the hospital when the transport team came to pick up Cory. We saw him off and wished him a good and safe flight home on the Medivac. He was accompanied by a transport nurse, a doctor, and a respiration therapist. Cory arrived in Winnipeg and was taken straight to the Children's Hospital in the NICU.

Later that day Molly & I took a West Jet flight home. We sent 95% of our luggage home with Lee, hoping to make the whole flight home alone experience a little more effortless. Even with only one carry-on bag, the stroller, and Molly it was still pretty much something I hope I never have to do again by myself. But we managed to get home in one piece. Lee met us at the airport with lots of hugs and kisses.

Before picking us up at the airport, Lee went to visit Cory in the NICU. I was glad that Lee got to see where Cory would be spending his next few weeks. It was getting pretty late by the time we met Lee at the airport, so we decided that instead of going back to the hospital, we would all go pick up our dog from Dave & Sonia's house. It was soooo good to see Jaxon! I was so excited that I peed on the floor! Sonia then proceeded to smack my nose with a rolled up newspaper. I gotta tell you... I learned my lesson and I'll never do that again!

The next day we all headed over to the hospital to see Cory. It certainly was different than the hospital in Edmonton. It took some getting used to with all the different equipment, different nurses, different procedures. The transition from Edmonton to Winnipeg was not entirely smooth. First thing I noticed when we arrived was that Cory was lying on his stomach. I immediately and politely told the nurse that Cory was not supposed to be on his stomach or have any pressure on his chest due to his surgery and the shunt that was put in to help his heart. I was told that they do this all the time with heart babies. I had to ask again (this time not so politely) for them to put Cory on his back or his side as I once again schooled them on Cory's requirements. I asked all the nurses that came near Cory questions that I already knew the answers to just to see what they knew or didn't know about Cory. From the answers I got it looked like it was going to be a loooong stay in the NICU. I don't think they liked Mamma Bear very much after the first day of visiting. The other problem we were facing was that Molly was not allowed in the NICU in Winnipeg. We were so used to carting Molly around everywhere with us in Edmonton, that it was a real hassle not being able to do the same in Winnipeg. This, as you could imagine, made visiting Cory very difficult. I couldn't be there as much as I would have liked and I felt horrible leaving Cory there by himself. Molly & I would generally meet Lee at the hospital at noon when he was on his lunch break and visit for an hour or so. Then we would all meet again at 4:30 when Lee was off work. We would eat supper at the hospital and spend the evening with Cory. Lee and I had to take turns going into the NICU to visit Cory while the other one sat in the waiting room playing with Molly.

Once we got used to the nurses and procedures in Winnipeg things got better. One by one Cory's tubes started coming out. He was weaned off his morphine and other drugs. Things were really starting to look good. However, Mamma Bear had to make a couple more appearances before our stay in NICU was done. They really seemed to want to have Cory put pressure on his chest. I learned that one of the NICU staff was holding Cory up on her shoulder (as if she were burping him) and I flipped! I spoke to the head nurse and again advised that Cory could not have pressure on his chest due to his shunt. I told them that it was standard procedure for babies with Cory's condition. They weren't sure where I got this information from so I told them that the surgeon himself told me the rules. They were still sceptical and told me that there were no orders on Cory's file telling them not to put pressure on his chest. I told them to get me a piece of paper and I would write them some orders myself. They finally conceded and agreed to put up a sign and put in an order on Cory's chart following my wishes. I finally had cardiology talk to them and tell them that I was indeed correct and that it IS standard procedure for HLHS babies not to have pressure on their chest. HA! I win!

Lee & I were very concerned about Cory. He was constantly retching and throwing up after his feeds. We did feel a lot better knowing that Cory was constantly being monitored and watched one-on-one by the nurses. We got a call at home late one Wednesday evening from the NICU. After my heart started beating again I learned that they wanted to move Cory to a ward in the Children's Hospital. I was really upset by this news as the previous day they told me that Cory was not ready to be moved. I had also heard some stories about the wards that made me really nervous to have Cory there. I was told that Cory would not have a one-on-one nurse, that he would not be on his monitors, and that the nurses only check in on him once an hour. So, at 11:00pm that Wednesday night (February 28th) I headed back into the city to be with Cory in the hospital. It was a long long night for Cory and me. It was a lot noisier on the ward than in the NICU. And we had to deal with a bunch of new nurses and procedures and equipment. I ended up spending the night with Cory who was thankfully in his own private room. There was a chair that converted into a make-shift bed. I was cold and tired and miserable... but there was no way I was going to leave Cory alone. I advised his new nurse about Cory's condition and the rules that go along with him. I quizzed her off on what she knew and didn't know about Cory. I then told her that he throws up a lot after he eats and that he needed extra attention as I didn't want him to choke and have no one notice. As I mentioned... it was a long long night.

Lee and Molly came the next morning. Again we had to deal with another transition from NICU to ward. I really do think the transitions are the worst part of the whole ordeal. Things finally started getting better on the ward. I had the nurses "trained" the way I liked them. There were a couple of nurses in particular that I really really liked and felt comfortable leaving Cory with through the night. Otherwise, Lee & I were taking turns spending the night with Cory. I think Mamma Bear only made one (OK... two or three) appearances while on the ward. I certainly got myself a reputation in that hospital! But every time I roared I got better care for Cory. Wait a minute... Do bears roar or do they growl??? I'm not sure. Either way, I got what I wanted! I win again! Woo hoo!

Cory was starting to look really good. He was starting to tolerate his feeds a little better, his sats (the oxygen level in his blood) were looking good, and he had started to put on some weight. Lee and I were VERY happy with his progress. We were finally told on March 6th that Cory would be able to go home. The doctors all took one last look at him and decided that Cory could go home on the following Monday (March 9th). I was so excited! That was only one month after Cory's surgery and he was ready to come home. Lee & I had been gearing up for a lengthy hospital stay but now we were told that Cory could come home. Before Cory could come home I first had to learn a few things to be able to take care of him. Since he was still eating through his feeding tube I had to learn how to insert it incase it came out. I had to do three successful inserts before they would let me take him home. Thank goodness I'm a quick study! I learned how to insert the tube and got myself a passing grade. It was a little unnerving at first... having to stick a tube down your baby's nose and down into his stomach. Cory is not the happiest little baby when I have to do this, but we manage to get the job done. I also had to learn how to give Cory his twice daily needles. I HATE giving him his needles. But I guess if the option is give him a needle or stay in the hospital I'll gladly do what I have to do. Cory is also on a few other medications, but those I am able to give him through his feeding tube.

We ended up bringing Cory home on February 10th. It was way too slippery out on the 9th and I didn't want to risk the highways incase we had to rush him back to the hospital. It was the best feeling ever to have both my kids home with me. It was a big adjustment having Cory home. After all... I didn't have the nurses to change his diaper, remember to give him his meds, and hook up his feeding tube. I don't think I took my eyes off of Cory for the first few days. I was constantly looking to see if his colour was right, if he was too cold or too warm, if he was eating properly, if he was choking or retching or throwing up... Lee's Mom came to help out and ended up spending a lot of time entertaining/distracting Molly while I tried to figure out Cory's schedule and charts and moods. It was such an odd feeling. My son was 5 1/2 weeks old and I was just bringing him home for the first time. I felt like I barely knew him. I was finally going to get to be his hands-on Mommy. I wasn't sure if I would be able to do right by Cory and take care of him properly... but it turned out it was the same as taking care of Molly. I just had to remember way more stuff about Cory and his condition and medications.

We had a little bit of a set-back on Friday the 13th. Cory had lost a bunch of weight, was somewhat lethargic, and had contracted a virus. I took him to the Heart Clinic for a check-up and they told me that Cory had to be re-admitted to the hospital. UGH! I was so upset. But it was best that Cory be with the professionals incase something were to happen to him. It was very frustrating having to be back in the hospital and having to go back and forth with Molly again. At least on the ward Molly was allowed to visit with me. I again set up her playpen in Cory's room and we spent the days being with Cory. This time our hospital stay was much shorter. We busted out of there on Wednesday the 18th. Mamma Bear only made one visit to the hospital during that stay. I gotta tell ya... I love Mamma Bear. She really knows how to get things done!

So to sum it all up, Cory has been home for a couple of weeks now. We've had several appointments with doctors and cardiologists and pediatricians. Everything is coming along great. Molly and Cory are over their colds (Yay! No more snotty, runny baby noses!) and Cory is steadily putting on weight. We have managed to get a bit of a routine going during the days and life is not as hectic as I thought it would be being here all by myself with two beautiful babies. I actually do get some quiet time to myself. Well... I guess if you call doing laundry and washing baby bottles and preparing medications quiet time, then I do get some.

The feeding specialists told me that Cory likely would not take a bottle until after his second operation. But my little super star is already doing quite well with the bottle! He took to it like a fish to water! So now he takes about 1/2 of his formula through the bottle and the rest through his feeding tube for three of his six daily feedings. Way to go Cory!! I'm hoping that he will be totally bottle fed in no time.

Molly is doing terrific! She loves to sing to her little brother. She loves to play with her toys and watch the Disney Channel. She loves to dance and she loves to play peek-a-boo. She LOVES books and will tell you some great stories if you let her. Molly finally cut her first tooth! She actually has two teeth coming in now and she likes to bite your fingers with those sharp little things. Molly is growing like a weed and wants so badly to walk. She is trying to crawl, but I don't think she is too interested in it. She loves to stand up and hates to sit down. I think she's going to forget about crawling and go straight to walking. Boy... won't my life be fun then! Molly has a mischievous side to her and she always keeps me on my toes. We have a walker for her and she tears around the house like nobody's business. She spends hours in her walker and loves to chase the dog around the kitchen table. And bath time for Molly is the best part of the day! She splashes in the tub and giggles and grins like she was born to be in there. I think she's really going to enjoy our pool this summer!

Jaxon (our dog) is doing well. He is not too happy with Lee and me for bringing another baby home. He is always vying for our attention now. We do try to spend as much time with him as we can, but the poor little fellow does need a little more attention and playtime. I think as the weather keeps warming up we'll be able to spend a lot more time playing outside with him.

As for me... I'm doing great! I love having my babies home and I love being a Mommy! I still haven't had a chance to get to the grocery store since I've been home from Edmonton, but thanks to all our good friends and neighbours and Play Group friends we are not starving. Thank you to everyone who has sent over meals for Lee & me. They are delicious and very handy to have on hand. Thank you, thank you, thank you! And thanks to everyone who has sent gifts over for Cory and Molly. I cannot thank everyone enough.

Lee is also hanging in there. He loves having the babies home too, but I think he is missing riding his horse. Oh well... there'll be plenty of time for that after Cory's second operation!

We look forward to everyone meeting Cory. We welcome visitors, but if you do want to visit please ensure that you feeling healthy. We can't have Cory in contact with anyone who may be ill as this could be very detrimental to Cory and land him back in the hospital.

Well... I guess I should leave it at this for now. I will really really try to post more often. It should be a lot easier now that I've brought you all up to speed on the past month and a half. Feel free to call or email. And as always I look forward to all of your comments!

Take Care!
Kristine & Lee
883-2003
kmyers@mts.net