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!

The Non-Update Update

I think these updates are my favorite. Over the last year I have spent so much time buried in doctors, nurses, and procedures, that this blog became about explaining diagnosis and interventions. I am proud to say that as of today, knock on wood, I don't have any of that for you. Elijah is doing well. Like really, really well. According to the scale at home, he has FINALLY crossed the 20lb mark. His pediatrician said that he was actually on the growth chart (2nd percentile but who cares about those details). They actually had to increase the dosage on his medication because he gained weight. I don't think they have done that in a year.

Elijah started preschool about a month ago. I was panicked about the whole idea of preschool for my little guy. When Noah started school I worried. This was different. This was full blown freaking out. He was so anxious around new people that I feared he would be afraid all day long. That he would cry. That he would look for me and I wouldn't be there. Oh man, my heart was so heavy. I felt like by working, I was letting my little boy down. I felt like, because of his special heart,  I should be able to stay home with him. But those are not the cards we were dealt and let's be real, I am a working mom. I am best as a working mom. Staying home with him would do nothing for either of us except relieve my guilt. So to school he went. And you know what? He did awesome. He was amazing. Can you believe that he did not cry? When he didn't cry the first day I thought it was a fluke and that the tears would start on day two. Then day two became day three and three turned into four. It has been a month. We have had a few tears along the way and a few moments of "you can't possibly be leaving me here again." But overall, this kid is flourishing. His language is exploding. He understands what you are saying and can follow multi-step directions. He is doing awesome.

Where I struggle is finding peace with him being okay. I feel myself always holding my breath. I'm always waiting for the other shoe to drop. I'm constantly watching his coloring and checking on his lip color (purple=bad). I'm monitoring his breathing and evaluating his effort. I need to relax. I feel like I am on borrowed time and I want that time to last as long as possible. I need to find peace in where he is now. I need to allow myself to stay in this moment.  Instead of borrowing worries by looking into the future, I need to enjoy this moment fully and completely.  So that is my goal. My mission. To sit in peace with where he is now. I will plan for the future but live in the present.

Doctor's Appointments

I've talked about it before. The incredibly long, incredibly intense days that are Elijah's cardio appointments.  It wasn't until I was talking to one of my closest friends that I realized what makes those days so intense. It isn't the time. Six hours really, in the long scheme of things, isn't that long. It's what exists in those six hours that makes it so exhausting. It's the worry, the anxiety, the anticipation of something going wrong that sucks the energy right out of you.

It starts with an xray. You finally get to UCLA, after battling traffic, and get your car parked (mind you it costs $11 freaking dollars to park). You make your way up the elevator and go to radiology. The nurses there recognize Elijah and are excited to see him. You enter the waiting room and wait to be called back. It doesn't take that long until they come for you. You take Elijah back and sit him on the seat and get your apron and his blanket. You try your best to hold him still, but he is not happy about any of this. They take their pictures and you are grateful that they work quickly. Once you are done with radiology, you have time to kill. So you make your way to the cafeteria and grab a snack and try to keep Elijah entertained all the while wondering if the xray showed fluid on the lungs, or if his diaphragm looks any better, or if a coil came loose.

As time gets closer, you head to the echo. Again, you wait in the waiting room to be called back. Once they come to get you, you realize that this is going to be rough. Really, really rough. You wonder if you brought enough snacks to get through the next hour. Is he going to rest peacefully? Is he going to cry hysterically? How bad will it be this time? You get to the room and begin to take his shirt off. He cries. You lay him on the table and lay next to him. You try your best to sooth him and comfort him. You realize that he isn't hurting, just angry and scared. Your heart breaks a little. You give him suckers and make shooshing noises. You sing to him. You stroke his hair. Until finally, almost an hour later,  the tech is done. You wonder what the tech found. Is his arch narrowing? Has the function deteriorated? Fear starts to settle in.

You clean him up and head to the next floor to wait for the doctor. The wait in the general waiting room is not bad. They bring you back and begin to take his vitals. He cries through the weight check and absolutely hates the blood pressure monitor. He has to hold still in order to get a good reading and that is an impossible task. The machine has to repeat the squeezing over and over and over before it gets a number. And that number isn't good. So we repeat the process. Again and again and until the number gets close to what the nurse expects. The nurse hooks him up to the pulse ox machine and waits. The number fluctuates between abnormal and absurd until the nurse asks if the number it settles on is "normal". Maybe it is, maybe it isn't. We move on to the EKG, not an incredibly invasive test, but uncomfortable non the less.

They begin their work quickly, attaching probes to his upper body. Attached to each probe is a thick, heavy wire. There are about 15 of them in total. He has to stay still for a few seconds in order for  the probes to do their work. You try your best to distract him from the fact that each of the probes is pulling heavily on his sensitive little skin.  The nurse waits for the machine to signal that the test is done and then she very quickly detaches the probes from the wires. But she leaves the probes for you to pull off of his skin. You wait until she leaves to start taking them off because you realize that she doesn't want to hear the crying. You try to do this quickly. You watch the skin as it pulls away from the probe and the cries begin. You tell him you are sorry and that you will try to move as fast as you can. You pull each probe off and they leave behind little red marks all over his upper body. You think about that adhesive remover you have at home and know that you will need that when you get home because his chest is covered in sticky goo. That, along with the left over gel from the echo, and you know that a nice, long bath will be in order tonight.

After you get them all off, you start the job of entertaining him. He runs all over. He plays with the nurses, the door, anything that keeps him busy. Because this is when the real waiting begins. Although you have been given a room, you know from experience that you are long from seeing the doctor. That in fact the doctor probably has three people ahead of you all waiting for the him to read their echos, look at their xrays, and examine their child. Not to mention that the doctor needs to take all the information he has accumulated that day and create a plan. He is a great doctor, unlike any you have come across, and you realize that he is worth the wait, but that doesn't make the wait any easier. You wait... and wait... and worry... and worry... and think of worst case scenarios and picture how the bad news will sound. You go all the way back to when the diagnosis was given. That moment in time that you will never forget. And you look at him now, so vivacious and energetic. So normal. And you remember that this time is a gift.

After at least an hour, if not almost two, of waiting the doctor comes in. He is so incredibly kind and you remember why you come to this place. He explains things in detail and asks you for your thoughts. He makes sure you are comfortable with everything and he sits with you. And sits with you. Until he is confident that everything has been covered and that everyone, including you, is okay with what was discussed. And you may not be okay, and that is okay. You understand.

You may need to visit the pharmacy after this is done or you may not. You pay for parking and head to the car. You load up a very, very tired baby and start the trek home. You started this during the lunch hour, and are now heading home in the thick of rush hour traffic. You have at least an hour, but most likely an hour and a half drive home. You are exhausted. Mentally, physically, and emotionally done.

Dion experiences most of these days. I am so grateful to have married a man who, no matter what, loves his children and will do whatever is needed. Elijah's last doctor's appointment went well. He now weighs almost 20lbs and may even be on the growth chart. We think Elijah will have his next cath during the summer and his Fontan, open heart surgery, in the fall. I try really hard not to think about that.

Back in the Routine...

Summer is officially over for the Coley family. I have to admit, it was particularily difficult to go back to work last week.  I was actually dreading returning. After taking some time to reflect, I realized that it wasn't work that I was dreading, it was leaving my boys. I really did enjoy spending the summer with them. We did so many great things and even though I had moments of frustration, I loved hanging out with them. Last summer was so incredibly intense. We were basically prisoners in our own home. Elijah was so fragile and Noah was struggling with sharing our attention. It was such a difficult time.

This summer was the polar opposite. The boys played in the old fashioned kiddie pool, we went to the zoo,  and the fair was a main attraction. We spent time in the garden and Dion grilled on a regular basis. It was nice. It was very, very nice. Part of me wishes it could always be like that. However, I also know that Noah loves school. I think he missed his routined. He is an energetic kid who needs a daily schedule in order to thrive. Elijah will miss his brother, but Jackie is back and everyone loves Jackie. He will get some one-on-one time and attention and maybe, just maybe, we can return to a solid nap schedule.

I too realized that working is good for me. I actually do enjoy what I do. I struggle daily with juggling home and work, but I am trying to keep that balance. I have yet to figure out how, but I am trying. I think that this is a struggle that really effects mothers. Fathers, for some reason, handle this better. I'm not sure if it's something engrained in me, but the guilt kicks in if I don't spend "enough" time with my kids. To add to that, I'm not entirely sure what "enough" is. I feel like it's never "enough." Going back to work means returning to the struggle to find balance. During the summer, I didn't have to worry about this. I didn't have to experience the guilt and wonder if I was being a good mother. I wish there was a manual. Some sort of guidance for working mothers who also want to be successful professionals.  But there isn't, so I continue to do what I hope is right for them and for me.

Summer Fun

I have been on summer break for a few weeks now. Elijah is still breathing fast, but better than before. We think that fast breathing may just be his baseline for now. His cardiologist thinks that he may need his Fontan next summer. This would be an early Fontan. For those of you who may not know, the Fontan is the last of three open heart surgeries that our little guy needs. I was really hoping we would have until he was at least three. He needs to gain quite a bit of weight between now and next summer. Weight gain is not an easy task for this little guy. He now weighs 18lbs. He had lost about 10oz after his last cath. For those of you who have been following the blog, you know that Elijah does not recover well from any cath and this one was especially difficult. All of that said, he is doing well overall and is loving spending so much time with his brother.

Keeping both boys busy has been our main goal this summer. My mom came for a week and gave us a few days to go away together. Dion and I went wine tasting in Temecula and had a great time. When we got back, my mom and I took the boys to Knotts Berry Farm and the Long Beach Aquarium. They both LOVED these outings. My mom also took the boys to the Zoo. It was like a mini vacation for all! Last Sunday we, along with Auntie Tren, took the boys to the Orange County Fair. We all had a blast. The weather was perfect, although a bit warm, and Noah loved all of the rides. It had been a very, very long time since I had been to a fair and it brought back a lot of good memories as a kid. Dion had never been to a fair. All in all it was a perfect day!