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

Neurodevelopmental Evaluation

When Elijah was born, actually before he was born, we were asked to participate in several studies. They really have little answers when it comes to HLHS, and they are working hard to get some. We agreed to the studies that did not require any invasive procedures for Elijah. One of those studies involved a study team following Elijah's neurological development. I had an MRI before he was born, he had another MRI after the Norwood, and about a month ago he went in for an evaluation.  They used something called a Battelle Developmental Inventory, Second Edition which involved a parent interview, structured activities with Elijah, and observation of Elijah.  The test assesses adaptive, personal-social, communication, motor, and cognitive skills.

Overall, Elijah did very well. He placed in the average range for everything. Areas of strength for Elijah were in self-concept and social skills and attention and memory skills. Possible areas of weakness were indicated in gross and fine motor skills and receptive language. All in all, Elijah is doing very well. He started walking a bit late and that was to be expected. He is a rock star. They will follow up with him in a year to do another assessment. The great thing is that they not only will give you the results of the testing, but they will also help you connect with agencies in the event that you need assistance.

There are so, so many variable when it comes to Elijah. It was a relief to know that this, at least for now, was not one of them. 

A bit of sadness along with holiday joy...

I don’t know if it’s the time of year, the upcoming holidays, or just the passage of time, but I have been thinking about my grandma a great deal lately. I miss her.  I talked to my sister the other day and she said she was feeling the same way. We reminisced and shared memories.  With the holidays on the horizon, it is hard not to think about my grandma. She used to make dresses and sweaters for the orphanage and she was the best baker around. One of my most prominent memories of my grandma are her cookies. She would start making cookies months before the holidays. They were amazing. She was amazing. It felt good to talk about her with Lyndsay, but it was also sad.

In retrospect, it may not have anything to do with the holidays. As time goes by and the boys get older, I can’t help but wish my grandma was here to watch them grow. I think that she would laugh at Noah’s antics and smile at Elijah’s enthusiasm for life. She would love Noah’s energy and the two of them would play and she would teach him how to cook. Elijah would be the one who would want to settle in her lap and cuddle. Elijah would be the one to sit and watch Jeopardy with her. I can see her now, holding him tight, saying soft prayers. These are the things I think about. The things that will never happen and it makes my heart hurt. 

It may be the holidays, or just the length of time between visits, but I have a strong desire to return home. To return to my roots. It has been a long time since I have felt that urge. I haven’t lived in Alaska in almost 14 years and yet it is still home to me. I have gone back before, but it was more for the fun of it, for the adventure of taking my family to Alaska and visiting with my dad and his wife. This time I feel like there is something pulling me there.  I’m not sure why I feel this way. I think a part of me needs the peace and absolute quiet that comes with wide-open spaces. There is a serenity in the landscape that calms me. I haven’t found that here. Although I do enjoy living in California, the pace can become tiresome. I need a moment to pause. The past year and a half has been filled with such highs and such lows that I think I am yearning for a moment of solitude to re-center myself.

In the end, I think it is all connected. My grandma was my family’s cornerstone. She grounded our family and was our constant. We may move, things may change, but she would always be there. I am looking for that place to feel grounded. I always felt grounded with her. I think she did that for many people. She spoke her truth and loved unconditionally. I miss her. I miss home.

Fall Fun

The boys really enjoyed Halloween this year. This was the first year that Elijah got to really participate in the festivities. They carved pumpkins, went to the pumpkin patch, and went trick-or-treating twice! Elijah is hilarious in that he wants to be just like his big brother. He follows Noah around and gets so angry when he can't do something Noah does. As each day goes by, we see a little more of Elijah's unique personality. He is an amazing little boy who is truly enjoying life. Together these boys can tear our house apart in 1.2 seconds. But man do I love them!