Weekend Away

Last weekend, Greg and I were able to go away. We left Friday just after noon and came back Sunday evening. We had some WONDERFUL, AMAZING friends who volunteered to care for our children in our absence. Our friends Sharon & JB and their girls had the kids Friday and part of Saturday. Then our friends Shonna and her daughter, Kayla, watched them Saturday afternoon until Sunday afternoon. And, since we weren't home by the time they needed to leave, Sharon & JB took over again for a couple hours.

We had a bit of a runaround before we ended up at a hotel on Friday. We wanted to stay in Half Moon Bay, but cost was prohibitive and availability was low. So we had booked a room in San Mateo (a little east of Half Moon Bay) and planned to drive over during the day. However, upon our arrival at the hotel, we discovered the location was less than ideal and a little undesirable. In addition, the hotel was booked at 100% capacity and the only available room was a smoking room. I walked into the room to see how bad the smell might be and I immediately started getting a headache. At that point, I knew that there was no way we could stay there. So we got online and found another hotel in Mountain View and booked it. It was a little strange because Mountain View is right by Palo Alto where we spent almost three months at the hospital at Stanford. But the location was much nicer and the room itself was nice too.

Friday night we actually went to the hospital for a few minutes to see Caden's primary nurse, Amy. She was working her last night shift before becoming a fully daytime nurse. It was so great to see her even if it was brief. I know, some people probably think we are crazy to go visit the hospital when we had time away from our kids. But we really do owe Amy our gratitude for saving Caden's life. She was his nurse the day he coded and if it wasn't for her quick response, he might not have survived. Thank you Amy, we can never repay you for that!

Saturday, we spent the majority of the day over at Half Moon Bay. We borrowed a friend's tandem bike and went on a nice ride along the coast. There is a really nice path along the coast and I think we rode around 8 or 9 miles. Nothing too strenous, but pleasant. I love being the backseat rider because I got to take pictures as we rode along. This is really the only way Greg and I enjoy a bike ride together. If we ride separate bikes, I can't keep up with him and he has a hard time going slow enough for me. So a tandem is a perfect solution! :) And after our ride we spent some time hanging out on the beach. All in all a very relaxing day. That night we were going to see a movie, but the times just didn't work out with our schedule so we ended up staying in our room and watching a movie.

Sunday we took our time checking out of the hotel and headed to some outlets to do a little shopping before driving home. It was a really nice weekend and we had a good time. We are so blessed to have such wonderful friends who are willing to care for our children so we could get a little break. As always, there are mixed emotions on coming home. We really missed our boys! But we really enjoyed the time together and it ended all too soon. Maybe we'll get the chance to do it again sometime.

Let me also say that leaving Caden with anybody overnight was a HUGE thing for me. It was the first time I've been away from him overnight since we left the hospital at the beginning of March. If it wasn't for our friends, I don't know if I would have done it. I think they love our boys as much as we do and they have all taken care of Caden multiple times. They're comfortable with the g-tube and aren't scared of it. That being said, I trust them immensely and are so grateful for the sacrifices they made so we could have some much-needed time to reconnect. Having a child with medical issues takes a lot out of a person and a marriage. And it's not easy to find people you trust to watch your kids while you take the time for each other. I'm glad we did it though!

I hope you enjoy some pictures from our weekend (mostly during our bike ride):

Primary Nurse Amy

Us at LPCH in CVICU

Getting ready for our bike ride at Half Moon Bay

My photography skills at work from the back of the bike

More photos while riding

More pics from the bike (I'm a slacker riding partner!)

On the beach (did I mention it was FREEZING?!!!)

Uh oh! How'd that picture get in here? ;)

My incredible hubby!

Proof that we were at Half Moon Bay

1 Year Anniversary

Today is the 1-year-anniversary of the day Greg & I had our ultrasound with Caden. It is hard to believe how much has happened in the past year. It has me reflecting on all we have been through and where we are now.

I'm sure there are some of you who are newer to our blog and may not know Caden's whole story. At our 18-week ultrasound on August 21, 2008, multiple “issues” showed up on Caden. The tech was very quiet during the ultrasound and it did make us wonder. And, when we had to wait for almost an hour in the waiting room before seeing the doctor, again we wondered. When we finally saw her, she told us our baby's heart didn't have all four chambers and based on what they could see, it looked like he had neurological issues and probably Downs Syndrome or another chromosome disorder. She referred us to a perinatologist office for a higher level ultrasound. When we saw the doctor there, he basically told us there was no way our baby would survive outside the womb and we might as well terminate. He wanted us to do the amnio and then terminate.

The emotions a parent feels when they are told to end their precious child's life is something I can't put into words. It was the most painful thing I had ever been through. Well, as you all know, we did not choose to terminate the pregnancy. We don't believe that is our choice to make whether to end a child's life or not. And, especially when the amnio showed no chromosomal problems, we started to feel a glimmer of hope. As my pregnancy progressed, many of the things they had seen wrong with Caden went away and what he was left with seemed much more manageable: coarctation of the aorta (all four chambers were there), and diaphragmatic eventration with small right lung. So the doctors started talking about delivering at Stanford so he could have surgery. What a change from where we started! Not to say he still didn't have some serious issues, but comparatively, this was something they could help.

We picked a name soon after our ultrasound because it was important for us for our baby to have a name. And, the meaning of the name was very important as well. We settled on the name Caden Joshua because Caden means “fighter” and Joshua means “God rescues.” Both of these fit well. All we could do was put our faith in God and continue to pray for our little man.

It is amazing to think what we have been through in the last 12 months. In some ways it seems like a lifetime ago when we sat in our doctor's exam room listening to what she was telling us, and me crying my eyes out at the knowledge that I wouldn't be getting my perfect, healthy baby boy. But, it also feels like it was yesterday, as the feelings and emotions can come back to me in an instant and I am right back to that place, my heart heavy for my baby.

As a parent, you want your baby to be healthy and perfect. But for us, that wasn't meant to be (with either of our children). Regardless of their health issues, we are so incredibly blessed! Kyler is such an amazing three-year-old. He is incredibly bright and loves his baby brother. He shows no signs of jealousy for which we are grateful. And Caden is so amazing. He is mellow and sweet. His personality is developing more and more every day and it is amazing to watch. At our developmental appointment a week ago, they told us his cognitive abilities were well within normal range. A far cry from what we were told a year ago. Caden has lived up to his name: he is a fighter more than he, or any child, should have to be. This sinful world we live in terrible. But we know that regardless of how things go on this earth, we have eternal life to look forward to. Our faith in God is what has gotten us through to this point. We know our journey continues and isn't over yet. But we try to keep our eyes focused on heaven and we will get through.

Thank you all for your amazing love, support and prayers throughout this past year. We have drawn strength from those around us and are truly grateful. We don't know what the next year holds, but we are ready to find out. Thanks for joining us on this roller coaster ride we call our lives.

Funderland

On Friday, August 14, our local heart support group, Hearts of Hope, had an end-of-summer get-together at Funderland. This is a small amusement park for children in Sacramento. We were really looking forward to it because we knew how much Kyler would love it and we were looking forward to meeting and talking with other heart families. This support group is really important to us, me in particular, as I need to be around people who understand what we've been through and what challenges we face. And, I think as Caden grows up, it will be important for him to have friends who have the same scars as he does so he doesn't feel different or weird.

We had originally planned to take Caden with us as well, but due to him being on heavy-duty antibiotics, he is unable to be in the sun at all. So, we arranged for respite care for him for the afternoon/evening so the rest of us could go.

The event was scheduled to go from 5 – 8 pm and we arrived on time in order to maximize the time Kyler could go on the rides. The event was paid for by Sutter Memorial and we had the park to ourselves. There were over 150 people attending and they closed the park down to the public and had it open just for us. Wristbands were provided for unlimited rides, pizza, drink and Hawaiian shaved ice were all available also free of charge. Gift bags full of fun goodies were given to all the kids, including the siblings, not just the heart children. And, t-shirts were provided for all the heart children and all the parents. How incredible is this group???

Teimour, the cardiothoracic surgeon who was with us at Stanford is now at Sutter Memorial and he was at the event helping to check families in and handing out wristbands and goodie bags. He brought his beautiful wife and daughter with him and it was great to meet them. He spent time socializing with all the families and is just a nice, kind man.

When we arrived, Valerie, one of the co-chairs of HOH, asked us if we would mind if the channel 10 news reporter followed us around and featured us in his report on the event. I was really hesitant at first because I don't like being on camera. But Valerie said she really would like one of the families who had a relationship with Teimour since they would be interviewing him as well. So, we agreed. The reporter put a mic on Greg (I didn't want to be the one talking!!!) and asked him lots of questions. Then he spent time following us around the park taking video footage of us. The feature was on the 11 o'clock news on Friday night. We recorded it and saved it to DVD. I just wish Caden could have been there and part of the story as well. The feature was about 2 ½ minutes long and was a really good segment. Valerie said it's one of the best HOH features ever so that is kind of cool. Anything we can do to bring more awareness to children with CHD is a good thing.

Anyway, we were thinkning about getting ready to go home when Greg got a call on his cell phone. When he hung up, he simply told me we “have to leave right now!” I didn't ask any questions, we just grabbed Kyler's hands and ran out of there. I knew something must be wrong with Caden so we just needed to get home as fast as possible. Poor Kyler was not happy about leaving so abruptly. We usually try to give him a little warning before we leave a place like that so he is more prepared. But once we got to the car, he settled down and did fine the rest of the way home.

Apparently, our respite worker had locked herself out of the house, leaving Caden inside all by himself. That is the extent of what Greg found out on the phone. The person who rents out our old house across the street is the one who called. We didn't get any details but that she was locked out of the house. So, we were a little frantic as we didn't know where Caden was at the time. Was he on the couch, the changing table, the floor, in his crib??? We just didn't know. When we got home, the respite worker was EXTREMELY apologetic about the situation, with good reason. The front door remains locked and if you pull it shut behind you, you're locked out. She had gone outside to throw a diaper in the trash and got herself in trouble. Her cell phone along with our phone numbers were all inside. So, luckily, our renter drove into his driveway right then and was able to call us for her.

Needless to say we drove home VERY fast and were anxious to find out if Caden was okay. We were quite relieved to find out he was in his crib fast asleep. He never knew anything that had gone on. The worker said she had gone and stood by his window at the back of the house and listened for him. She said he fussed for a couple minutes and went to sleep and was quiet the rest of the time.

We were a little stressed by the whole situation, but are so grateful everything ended up okay. We had such a wonderful time at Funderland with Kyler. He loved all the rides and wanted to go over and over again on all of them. The weather was perfect and we couldn't have asked for a better time except for our hasty departure. HOH is such a wonderful, incredible, support group. I don't know what I would do without them.















Kyler was so excited by "Dinger" the Sacramento River Cats mascot. Just look at his hands in motion!

Teimour and his wonderful family

Developmental Assessment

On Wednesday, August 12, Caden had a developmental assessment appointment at Sutter Memorial Hospital. They contacted us shortly upon our arrival home from the hospital in Stanford about setting this up. I guess they like to do these appointments for high risk kids and preemies and he will have a couple more over the next few years. I didn't really figure they would tell me anything I didn't already know about Caden. After all, we know he is developmentallly delayed, especially with his gross motor skills. But that is the reason he is receiving physical therapy and working with a developmental specialist.

First we met with a physical therapist and an occupational therapist where they did a standardized assessment of him. I don't have a copy of the report yet, but from what I can remember, he scored in normal ranges for cognitive ability. His fine motor skills were on the low end of normal and his gross motor skills were way below normal. Nothing too new there. But it was nice to have the confirmation that his cognitive abilities seem good.

After meeting with the PT and OT, we met with a Nurse Practitioner. She weighed him, measured his length and head circumference and just talked to me about his overall medical issues. She could clearly see that we are on top of all his issues and said she was impressed.

Then we met with a social worker, just part of the package deal. She had gotten a brief update from the people we had already seen and was aware of all the services and therapies Caden is already receiving. So, she just wanted to know how we were handling things and if we had a good support network. I didn't spend too much time with her as I told her we were getting all the help we needed and had a fantastic support network. Our meeting with her was very brief as it didn't seem she could find anything “wrong” with our family, etc. All she could say is that we seemed like we were being really proactive and doing a great job.

Overall, the appointment went fine. It was just a long morning for poor little Caden. But the assessments pretty much confirmed what we already knew so there were no real surprises.

MRSA

Well, you would think I would be familiar with the ups and downs by now, but it I still get so discouraged with any setbacks. On Thursday, August 6, Caden had his follow-up with the pulmonologist who did his bronchoscopy. I asked her if the cultures showed anything or not and she said that the culture they took from his lungs grew MRSA. For those of you who haven't heard of this, it is “methicillin-resistant Staphylococcus aureus.” Not the easiest bug to get rid of. And it seems the majority of people who get it receive it while in the hospital. And, since our little man spent two months living in a hospital, apparently, he was lucky enough to get it! Kidding, of course.

Just when we were finishing up all our medications (today), we have to start four weeks of oral antibiotics. :( Our pulmonologist said this definitely makes Caden more susceptible to bronchitis, pnemonia, asthma, etc. She said this next fall/winter we will for sure be getting synagis shots for him (to prevent RSV).

The other bummer related to this, as if this wasn't enough, is that his right lung is already small. We've been hoping for more growth in the lung tissue and hoping that it will grow a little bigger with more use. However, because of the MRSA, the lung has been focusing all it's attention on fighting the infection and probably hasn't been able to grow at all. She said it was possible it would even help his breathing rate slow down since it has been consistently high.

I have to mention the silver lining of the day, however. She said there was absolutely NO sign of aspiration in the lungs which was GREAT news. After the bronchoscopy we had stopped all attempts at oral feedings because there was still the risk of aspiration due to the damaged right vocal cord. But it appears that despite the damage, the cords and the epiglottis are able to fully protect the airway. So she said we are safe to begin attempting oral feedings again. I am really happy about this because Caden is already extremely sensitive to anything going in his mouth. His oral aversions are terrible. So I didn't want to lose any more ground by having to wait indefinitely to start up again, if at all.

So, please pray for Caden as he continues to fight this infection. Obviously he's been battling it for more than 5 months now and we had no idea. But hopefully this antibiotic will help clear it up and help him breathe easier as well as help his lungs grow new tissue. Mixed blessings at our appointment for sure.

Caden's Heart Cath Follow-Up

On Tuesday, August 4, I took Caden in to see Dr. Van Gundy for his heart catheterization follow-up. I figured it was pretty routine and wasn't too concerned about it since he had already told me what they had found during the cath. The only thing I really wanted to talk to him about was Caden's medications and if we could start to wean the two remaining. Before I could even ask him about it, he said he wanted me to wean the blood pressure med to once/day (from twice/day) for two or three days and then stop completely. And, he said once that one was done, wait a couple more days and stop the Lasix, which we've only been giving once/day. So, as of this weekend, Caden will be completely done with all his meds!!! I'm so excited about that. One less thing to deal with. :) Little by little we are getting there. Now if we could only get him off the feeding tube...

My Back

I can't remember if I've posted anything about my back or not. But since it has been affecting me pretty significantly, I thought I should say something about it. Many of you may know that I was in physical therapy last year for 6 months with severe sciatic pain and piriformis syndrome. The two things aggravate each other and cause me a lot of pain. I was in PT from January through June last year and was finally feeling pretty good. Of course, at the time I left therapy, I was pregnant. In the first few months of the pregnancy, I managed to stay in pretty good shape and felt good. But then I got put on strict bed rest. So... all the muscles I had built up and the strength and flexibility I had gained was completely lost! That's what almost 10 weeks of bed rest will do to the body. Then you add a “little” stress on top of that and a baby in the hospital for two months and you have a combination which brings back all the pain from before plus more.

In May I finally went to see my doctor to have him refer me to PT again. I knew I had a long road ahead of me in order to get myself back in shape. Before I could get in for therapy though, we went on vacation and during that time, probably due to the long road trip, my back caused me excrutiating pain. The spasms in my lower back were incapacitating. I could barely function at all. As soon as I returned from our trip, I started PT. It really helped with the muscular issues but I felt like something more was going on. My therapist suggested I go back to my doctor and ask him to order an x-ray or MRI.

I saw my doctor and had the x-ray taken. It didn't show anything conclusive, so he ordered an MRI. The results of that showed I had a herniated disc (between L3-L4), a bulging disc (between L4-L5), and arthritis in joints L3-L4-L5-S1. Yuck! When I met with my doctor to follow-up on the MRI, he said at this time, there is no treatment other than stretching, gaining flexibility and core strengthening. He said the disc and arthritis concerns are “mild” but he is somewhat concerned because I am so “young.” His words, not mine! :)

It is too bad that I have these issues but I am doing all I can to get better and minimize the pain and degeneration. Physical therapy is definitely making a difference and I am stronger and have more range of motion than I did 5 weeks ago when I started. I hope it continues but I realize it is going to take consistent work on my part in order to stay as healthy as possible. It's just hard because I already have so much going on it's hard to add one more thing to the list. But I will do what I have to do.

Drag Races

On Sunday, July 26, we took Kyler to the Drag Races in Sonoma for the first time. Greg's Uncle Ed is the crew chief for the Napa Auto Parts Funny Car. Ed is also well-known in the racing industry as “The Ace” McCulloch and was a driver long before he was a crew chief. Since these races are so close to us, we have been going every year since 2001. It's been a fun experience but we have never taken Kyler. We just didn't want to damage his hearing at such a young age. Those cars are loud! But we figured this year we would take him because it would be fun and he is old enough to keep the headphone ear protection over his ears. And, he is so interested in race cars.

I enjoyed the races more this year simply because he was there. It was so amazing to watch the sheer joy of a child watching them for the first time. It was so sweet! He was mesmerized by the whole experience and it didn't matter which car won to him, each time there was a race, he would grin ear-to-ear and proclaim, “They Won!” Uncle Ed's car won first round but went out in the second round. But that gave Kyler the opportunity to sit in the driver seat of the funny car. He was so excited about it. It's great to be VIP's as most people wouldn't have an opportunity like this. All in all it was a very fun day and Kyler was exhausted by the time we got home.

Here are some pictures:

The race track in Sonoma

Enjoying the races in the stands

The Napa car getting ready for 1st round

Kyler with Uncle Ed


Ky getting to sit in the funny car without the body of the car on top