May Fun!

As the weather gets better (was it every really bad???) we find ourselves out and about a lot. This month has been full of weekend festivals and backyard fun. Elijah has definitely come into his own and has a great personality. He adores Noah and follows him everywhere. Elijah has no idea that he is not a "big boy" like Noah. Elijah now goes to school with Noah and the teachers report that Elijah is fitting in very well. However, he is constantly harassing Noah. I guess that is what little brothers are for!

Noah played on his first T-ball team. He liked the game, but not the amount of time it took to play. I think Dion and I have decided to let sports wait for a few years. When they are only four, they lack the maturity and stamina to play a two hour (yes that's right) game. Elijah hated every minute of baseball because he did not understand why he wasn't allowed on the field with his brother and his dad. Yet another reason to wait a few years.

Elijah had his first holter monitor a few weeks ago. Although not a painful thing, it was really annoying. For those of you who do not know, a holter monitor consists of little sensors that attach all over your chest or back. The sensors are attached wires that connect to a small machine that records your heartbeat for 24 hours. Keeping that thing on a two year old is a feat in and of itself. We visit the cardiologist next month, so hopefully we will hear the results of the test then. At his last appointment, the doctor was concerned that his heart wasn't beating as fast as it should have been considering that he was crying. Hopefully that was just a fluke.

Elijah goes in for another cath on June 12th. I'm hoping everything is fine, but I have a feeling that they will need to coil a few more arteries. His breathing has been fast and heavy. I think they will also need to expand his stent a little.  If everything checks out between the holter monitor results and the results of the cath, we should be waiting until next spring/summer for the Fontan. Keep the prayers coming!

Fontan Postponed

For the last year or so the plan has been for Elijah to have his third open-heart surgery, the Fontan, this fall. We were all set to have a cath in June to prepare for the surgery. Monica was going to come and stay with us again and we were ready.  I should know by now that in the world of HLHS nothing is certain

A couple of weeks ago I got a call from Dr. Sklansky, Elijah’s fantastic cardiologist. He had seen Elijah the day before and the visit was very positive. Elijah’s sats looked good and he was continuing to gain weight. His echo was the same. Dion and Dr. Sklansky discussed the plan of action and we were ready. However, after consulting with the cardiologist at CHLA, Dr. Sklansky called me. It seems that the doctor at CHLA wants to wait a year before the Fontan.  Dr. Sklansky discussed his opinion about waiting and it seemed that he still wanted to continue with the original plan, but with the surgery happening at CHLA, it was ultimately up to them.

I have to say that the great thing about all of the doctors we work with is their openness and availability to the parents of their patients. After I talked with Dr. Sklansky, I emailed the doctor at CHLA with a list of questions and concerns. She replied immediately. She looked at his previous tests and concluded that it would be in Elijah’s best interest to wait. As he grows, his pulmonary arteries continue to grow distal branches which improves overall pulmonary vasculature. The Fontan relies on this and this may allow him to get a larger conduit. Waiting will also allow for him to gain some weight which can make for better post-op results. All of this to say that we will most likely be waiting until next summer for his Fontan. However, Elijah will be going in for another cath in June to evaluate and possibly dilate his stent.

I have mixed emotions about waiting. I am happy that this summer my little boy won’t be going through all that open heart surgery brings. However, there was a part of me that was looking forward to the freedom that the Fontan is suppose to bring. I have been dreading the Fontan for so long that there was a part of me that just wanted to get it over with so that we could move forward. However, I know that waiting is the best decision for Elijah. He is stable, growing, and happy right now. The longer we can keep him that way, the better.

Life Lessons... Painful though they be...

These are the moments in life that you will never forget, for better, or for worse. Elijah turned two years old last week. This is such an exciting time for him and for us. We have been looking forward to the day he turns two for the obvious reasons, but also because when he turns two, he is old enough to attend Noah’s preschool. Noah has been talking about this for months. Noah is so excited to have his baby brother at his school. Elijah adores his big brother and both Dion and I believe that Elijah will be much happier at school if his brother is there.

That having been said, having Elijah attend Noah’s school was easier said than done. I forget that people, not all people, are scared of little boys like Elijah. I guess I am so used to him that I forget that people may not be as inclined to work with a child like Elijah. That they may fear him simply because he is not like everyone else. That they see the scare down his chest as a sign of weakness, not a battle scar that should be warn proudly. They lack understanding, and instead of asking for the knowledge in order to understand, they judge and make up excuses. I forget these things sometimes and when they are shoved in my face I am so shocked, and hurt, that I retreat.

While I was fully prepared to get on this blog and blast the woman who made our lives that much harder last week, I am taking a different path. I am trying to be empathetic and understanding that this person who caused my family heartache is from a different generation and she acted out of fear. I need to learn to speak out and be aggressive in situations like this. I was so blindsided and I allowed myself to get run over. I didn’t speak out until it was almost to late. I need to know that this will happen again and that it is my duty, my charge, to be Elijah’s voice and to teach him that it is okay to have a voice himself. So instead of blasting a poor older woman who really just doesn’t know better, I am going to take this as a learning lesson. I am going to be the voice for my child.

Synagist

We have had a good couple of months. At times, we have forgotten that our little guy is even sick. He goes to preschool, plays with his brother, fights with his brother, and giggles like nobody else. However, it's days like today, that I am reminded. Every month during the flu season Elijah gets a shot called synagist. This shot is a vaccine that prevents a severe lung disease called RSV. This is a fairly common disease during the winter that in little guys like Elijah can be deadly. So once a month, every month, we drive to Healthcare Partners in Granada Hills and get his shot. It doesn't sound that bad, right. It's awful. Dion has been taking him for the past few months, but I got the luxury of taking him today.

We pulled up and got out of the car. As we entered the building, Elijah's demeanor started to change. When we got on the elevator, he curled up to me like he was frightened. People on the elevator tried to talk to him, but he just put his head down. Once we got into the waiting room he started to fuss. I pulled out the iphone and let him play a game. This helped distract him. Once we got called into the room, all hell broke lose. Just walking into the room set off uncontrollable tears. He didn't want to let go of me and he wanted nothing to do with the nurses. He cried the entire time, but he cried the most heart wrenching tears when the nurse who eventually gave him his shot came into the room. Those tears were from his gut. He recognized her. He knew that she was going to hurt him. My heart broke. Here I was, doing something that I know rationally is best for my son, but I also know that it will hurt. And I know that he is scared. And I know that I am the one bringing him that pain and that fear. I am suppose to be the one kissing the boo boos, not causing them. I should be the one wrapping him in my arms and running away from pain, not toward it. It's one thing to take your child to his periodic vaccine appointments. They don't understand what is happening and it only happens maybe once a year. It's an entirely different thing when your child knows the pain they are about to feel and the fear is tangible. All I know is that if this is a preview of what is to come with the Fontan, I am in trouble. I like to think that I am strong enough... that I can be the rock, the foundation. But I just don't know. You would think, after all we have been through that a little shot is nothing. It should have been nothing. But it wasn't. Today kinda rocked my world and not in a good way.

I try to end these posts on a positive note, but today I got nothing. Nothing except for the fact that Elijah is doing well and laying on me tonight and watch his favorite show Yo Gabba Gabba (otherwise known as baby crack). I am once again reminded to live in the moment. Not the past and not the future, but the moment.

UCLA Pediatric Heart Center

When we first started down this CHD path, we immersed ourselves in research. Many of you remember when we had to decide who our surgeon and cardiologist would be. It felt like a life or death decision. And it very well may have been. In the end, after looking at data, talking with parents, and consulting with doctors we decided that Dr. Starnes at Children’s Hospital would be Elijah’s surgeon. But we were still left with the decision of a cardiologist.  We were overwhelmed with all of the information and details and neither Dion nor I were prepared to make that decision at that time.

It wasn’t until after Elijah was born and had survived the Norwood that we made that choice. We called Dr. Sklansky and humbly asked if he would be Elijah’s cardiologist. Now mind you, Dr. Sklansky is an incredibly busy man who runs pediatric cardiology at UCLA. As in this man is the man. The man.  Everyone at CHLA loves him and there was not a person there that was not sorry that he left. When we went to Dr. Sklansky for our consult before Elijah was born, he treated us, Dion and I, like humans. Like parents grieving the loss of the child they thought they had. And he prepared us for Elijah. For the sweet little baby with half a heart.  He sat with us for hours when I was pregnant making sure that we understood what was happening.  We wanted Dr. Sklansky.  And Dr. Sklansky responded in kind. I remember that phone call. Dr. Sklansky was happy to be Elijah’s cardiologist and he was honored that we had chosen him. You need to understand that this man is amazing. He is perhaps the best cardiologist on the west coast (I know I know I know, I may be a little bias).  And he was honored to be Elijah’s cardiologist. I have never met a more humble, kind, brilliant man.

The point of this post isn’t just to sing the praises of Dr. Sklansky, although those praises are deserved. The point of this post is to celebrate. A couple of days ago Dr. Sklansky called and invited our family to the ribbon cutting ceremony for the new pediatric heart center at UCLA.  This has been a very long time coming. You see, before the new center, you had to travel all over the hospital for all of your different procedures and appointments. This meant coming into contact with all kind germs and very, very long appointment days. Under Dr. Sklansky’s inspiration and vision, they have renovated and created a “one stop shop” for children with CHDs.  The place is awesome.  We were honored to be a part of such an amazing event to celebrate such a needed facility. However, it isn’t the facility that makes the place what it is. It is the people. Dr. Sklansky, and our nurse Ashley, have been nothing short of a God send. We are incredibly blessed to have them in our lives guiding our son down this often scary and uncertain path.

Update long due...

Wowza it’s been a long time since I updated this blog. I’m not even sure where to begin. I guess the obvious place to start would be with the medicine since that was/is the purpose of the blog in the first place. Elijah had his cardio workup last Monday. He had all the usual procedures- Echo, Xray, pulse-ox, Doctor visit, etc. He hated every single second of his time at UCLA. He his now at the age where he recognizes things and remembers procedures and he wasn’t feeling it. If you came near him, he screamed. If you smiled in his direction, he let you have it. Poor kid.

Overall, the news was positive. His oxygen level is still good in that it is ranging from the low to mid 80’s, his diaphragm is down (instead of being sucked up into his chest as it was in the past), and his heart function looked more or less the same (depressed but stable).  The echo was pretty much the same as it had been in the past with a little regurgitation and some narrowing.  The most amazing news was that Elijah now weighs 21lbs 4ounces and is in the 6^th percentile. This was surprising in that Elijah just had a major stomach bug (which landed us at CHLA’s emergency room) and I was sure he had lost a ton of weight.  I can’t tell you how excited I was to hear that he had gained weight. Talk about happy dance time! It was all I could do not to break out dancing right then and there. I’m not entirely sure Dr. Sklansky would know what to do with me had I broken out the moves. 

Dr. Sklansky thinks that we will have another appointment in March and if all goes well, we will have another cath in June. This cath would be in preparation for the Fontan. The doctor thinks that the Fontan will take place in August. Ugh. I was hoping for another year before facing another open-heart surgery. Because all of Elijah’s procedures have been early and he hasn’t been the most simple case, Dr. Sklansky believes we will need to have an early Fontan.  However, all of this really depends on Elijah. He needs to gain weight. If his sats stay high enough, we may be able to postpone the Fontan a big longer. Yet again, we prepare for the worst but hope for the best.

In other news, Noah turned 4!!! I can’t believe my little baby is already a little boy. There are times when I look at him that I can’t help but remember the days when he used to curl up on my chest and sleep. I love that boy. He is so full of life and headstrong and I can’t wait to see what he will become.

Of course in all this news, we can’t forget about Christmas. Family has been in and out of our house since the middle of December. I think Noah may get a little depressed when the last of the family leaves. He has truly enjoyed having everyone come and sleep at our house. This is the first year that Noah truly understood and was able to appreciate the holiday and man oh man did he. He was in charge of the lights on the house and the lights on the tree. He and Elijah, along with my mom, made a gingerbread house and mouse cookies. My sister and I tried to make my grandma’s cookies. Although not a complete failure, it was also not a success. Some of the recipes turned out while others were inedible.  However, it was the experience that counted. It was the joy of being in the kitchen with my sister and remembering our grandma.

I need to give a shout out to my girl Jen. After totally mocking her when she told me she had tickets to a Beyonce concert, she invited me to join her. Although I don’t know any of Beyonce’s songs, it was a great night! I always love spending time with my BFF and add to that a great show experience and you have a wonderful night.  I really struggle with feeling guilty when I take time to myself, especially at night and especially now with this new job that demands some later nights.  However, it’s times like these that feed my soul.

Truly Inspirational. Meghan Roswick - HLHS