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!

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!

Summer Vacation

Dion and I are now on summer vacation! I love this time of year. We get to spend time as a family, visit with friends, and putz around the garden. I miss the pre-baby sleeping in, but I am enjoying the peacefulness of the early morning. Elijah had a doctor's appointment on Friday morning. He is growing on his own curve, but not really catching up to others his age. We are content as long as he is growing. Both of his ears still have fluid in them so we will continue with the antibiotics. The doctor is happy with his cognitive development. He has quite a few words and understands what we say. It looks like we won't be traveling for a while. His ears are still a mess and we are still waiting to make sure his breathing is stable. I was really hoping to go back home this summer, but it looks like I will have to cancel those tickets after all. I miss Alaska. I feel a sense of peace there that I don't typically feel anywhere else.

Elijah is finally getting back to himself. He started sleeping through the night again. He is back to walking around and playing with his brother. I missed his baby laugh and his big smiles, but after almost a week of misery, they are back! My dad has been in town for a week or so to attend my grandma's funeral and settle some of her estate. Although they are sad circumstances, I am glad he is here. The boys are growing so fast, I want them to know their grandparents. Noah loves his grandpa; Elijah is still trying to figure out who grandpa is. Elijah isn't the easiest person to get to know. He has a fear of people and it takes time for him to relax around new people. My dad rented a motorcycle for a few days and Noah thinks that thing is the best invention. He has spent every evening sitting on the motorcycle pretending he is driving. It is adorable!

I am looking forward to the next couple of weeks and hopefully we will be able to relax and refresh. It's been a rough year. We really need a moment of peace.

Grandma Ruby Thompson

I would really like to dedicate this post to my grandma, but I did want to let you all know that Elijah is home. He has been quite the miserable little guy and he seems to be very uncomfortable, but I am hoping he gets back to himself quickly.

My grandma passed away last week. Yesterday, the family gathered to celebrate her life and morn her passing. I have to say that I am a bit stunned by it all. I could write about her death, but I think I would rather reflect on her life. My grandma was vibrant. She breathed life into all she did and she did nothing half-way.

I remember her visiting us in Alaska during the summers and baking cookies and sewing. We loved when grandma came to visit because it meant lots of sweets and grandma lovin. My sister and I would come out to CA and stay with her for a few weeks during the summer. She was so much fun and always active with both of us. We would go to fairs and parks and attend her church. She would cook for us and laugh with us.

She was there for us through the good and the bad. She celebrated with me on my wedding day and comforted me when I cried during Elijah's first open heart surgery.  Grandma loved my boys and my husband like no other.  I always teased Dion and said that my grandma thought he was her boyfriend. She loved that man. So much so, that during the holidays, we would get a tray of cookies for the family and Dion would get his very own tray, specially made just for him. She would call him to chat and have him relay messages to my sister and me. She could have just called us, but she really just wanted an excuse to talk to him. He held a special place in her heart, just as he holds one for her.

Grandma's house was our family's touch-stone. Our center. It had nothing to do with the house. She was the glue that held us together. She was the example of what a person should be. What a mom, grandma, Christian... what a person should be.  I can only hope to be even a little like my Grandma Ruby.

Post Cath

Elijah is out of his cath and is currently staying the night at CHLA in CV Acute. The procedure took over six hours and he spent over three hours in recovery. They were able to coil many, many collateral arteries. His body has been working overtime to create more collaterals and his body has even forced blood past coils placed during the last cath to continue to grow arteries that were meant coiled off. It looks like they got all of the major ones, however, he still has a cluster of really small collaterals that the doctor was unable to coil. The doctor was able to balloon his aortic arch with should relieve some pressure. One amazing thing was that they were able to find the left subclavian that they thought had been sacrificed during the Norwood. Not only did they find the artery, but they ballooned it and restored bloodflow to his left arm!!!!

After the cath, he has to lay still and flat for six hours. You can imagine how he must enjoy that! They were able to bring me a reclining chair so that I could hold him and still keep him straight. He was struggling to breath and he was working really hard. He had a very loud strider as well. They had to give him a breathing treatment and he needed a blood transfusion. By the time they transferred us to CV Acute, he was breathing much easier.

Although I love CHLA, I was incredibly frustrated with their personnel this time around. You have to remember that we have been through this many times, but this time was disorganized and not at all what I expect from CHLA. First, I got a call yesterday saying that they needed to reschedule the cath because they didn't have pre-authorization. They had gotten authorization through the secondary, but not the primary. Needless to say, I was upset. I demanded that they put the authorization through and tell the insurance company that it was urgent. I forced the issue until they agreed to do whatever it took to make it happen. You have to remember that Elijah has been breathing really, really fast and that he needed this cath. In the end, they were able to get the insurance authorization and we kept the appointment. Second, yesterday Elijah spiked a fever and was pulling on his ear. I told Dion that I thought Elijah had an ear infection. Dion had the nurse at CHLA look at his ears as part of his pre-cath physical. The nurse told Dion that Elijah's ears looked fine, and that even if he had an infection, he would be placed on antibiotics during the procedure and not to worry. Even if it was an ear infection, they wouldn't cancel the cath. Then, later that same day, the fever spiked and I emailed his doctor at CHLA. She responded that she had spoken with the nurse and that Elijah's ears were indeed fine.

I was still suspect, but went along with them because they are the experts. This morning, Dion told everyone that he thought Elijah had an ear infection. By this time, icky stuff was oozing out of Elijah's ear. Everyone said that Elijah was fine. Dion told the nurse and one of the doctors (not the doctor doing his cath) that Elijah had spiked a fever last night. No one cared. Apparently, during the cath, he spiked another fever. They cooled him down. He then spiked yet another fever in the recovery room. I spoke to his doctor and she was surprised that Elijah had a fever last night. No one had told her. Later, while in the recovery room, her nurse came by to see me. She basically reprimanded me, with a smile of course, for not having told her about his fever. Say What???? She went on to blame Dion and say that she told him that if Elijah was to get a fever, we were to call immediately so that they could cancel the procedure. She never told him that. She was lying. To add to that, she basically told me that we were lucky that they were able to extubate considering that he may be ill. I was soooo mad. We told everyone we saw the details of the night before. She was trying to cover her ass and at our expense. To add salt to the wound, once we were moved to CV Acute, a different nurse came by to look at his ears yet again. She said that he most definitely has an ear infection. Without a doubt. Most likely the fever is due to his ears being to infected. Poor kid. The membrane in his ear had ruptured and the infection was oozing out. I knew that he wasn't well yesterday, but no one took me seriously and then they tried to blame me for their mistake. Not cool. I understand making mistakes. Heck, I  make mistakes on a daily basis. However, you don't blame others for those mistakes. Not cool.

Although I am still angry about the ear infection stuff, I am happy that Elijah is doing well. He is recovering and sleeping and hopefully he will allow Dion to get a little sleep tonight. It is our hope that he will be home tomorrow morning. Please keep him in your prayers!

Cath #4

Elijah is at CHLA getting his 4th cath done. I am stressed. I am worried. Please keep him in your prayers.

Blah... Eh... Ugh...

Umph... That is how I feel today. Elijah had his cardio work up today. Dion typically takes him to these appointments, but he wasn't able to today so I went. You have to remember that these days consist of an xray, echo, EKG, and doctor appointment. All of this typically takes 5-6 hours. These are looooong days and whenever I am the one to go with Elijah, I am grateful for Dion and his commitment to our family. There is no way I could do all of this on my own.

On a positive note, Elijah was a rock star today. He walked all over the place, the nurses knew his name and fawned all over him, and he said hi to anyone who would listen. You would never know that this kid has a life-threatening heart defect. He is typically shy and afraid of people, but man oh man he came into his own today and shined! He never cried during any of the procedures. He was amazing.

However, after all is said and done, he is going to have to go in for a Cath and a sedated echo. The sooner the better, according to his cardiologist. They are going to try to address three things; coil any existing collateral arteries, widen his aortic arch, and evaluate any blood flow issues. They hope that by widening the arch, they may increase blood flow this his arm as well as take pressure off of his right ventricle. Hopefully coiling the collaterals will help his breathing. I knew this was coming. I had a gut feeling we were headed back to the cath lab. Elijah's breathing has been really fast and his lips turn blue whenever he gets really active. He has started walking and is all over the place so we see his blue lips regularly now. I knew this was coming, but I'm still not happy about it. I hate that my little guy has to continue to go through these painful and scary procedures. I hate that he has to be scared. I just hate it everything about it. Ugh.

Balancing it all...

A couple of weeks ago I had the opportunity to attend a conference at CHLA that focused on women in STEM (science, engineering, technology, and math). They had an amazing panel of women that have accomplished a great deal in their fields. Each woman spoke about her journey, both professional and personal, and gave advice to the women in the room about perusing a career in STEM. Although I am by no means a “science person,” I found the event to be incredibly inspiring and motivating.  They all spoke to the idea of juggling family and career.  As a career woman, I am constantly trying to juggle my two lives, my two selves.  It is difficult to figure out how much my personal life can bleed into my professional and vice versa. I want to be the best at both, but that means that they have to work together, not against each other. I am not just a mother. I am not just a career woman. I am both.

One of the speakers spoke to this idea of juggling our working lives with our children. She went so far as to insist that we don’t need to separate the two. We are both and we need to embrace both and force the rest of the world to do so as well.  She talked about our partners and demanding that they to do their fair share at home. Women should not be responsible for all of the child rearing and housekeeping, along with their full time jobs. Listening to her caused me to reflect on my own life. I have not only a husband, but a partner. Dion takes full responsibility for our children and is in fact the main “deep cleaner” of our house! He takes Elijah to almost all of his incredibly long doctor’s appointments and he makes it a point to be at all of Noah’s soccer games.  Dion does not hesitate to encourage me to pursue my career goals, even if that means that more of the child care and household chores will fall on him. He is an amazing partner.

I started reading a book call Lean In, by Sheryle Sandberg. The book centers on women with careers and leadership roles and focuses on the fact that although we have broken the glass ceiling, we are still not equals in the upper levels of leadership.  It’s a fascinating book that really confirms what I had already heard at CHLA.  The premise is that when faced with opposition or challenges, we should “lean in” instead of retreating.  I think this applies to all aspects of my life right now, both professional and personal. I need to lean in to my career goals. I need to lean in when confronted with the scary aspects of Elijah’s health.  I need to lean in to my marriage and continue to commit to making time for just Dion and me.  I need to lean in.  Words to live by I think.

The croup and other happenings...

This is just a small update to follow up on the croup. Elijah is doing much, much better. His cough is almost gone and he is returning to his happy little self. If anything positive came out of all of this it would be that during our brief stint at CHLA he was monitored constantly. His pulse ox was in the mid 80's just like it should have been. During his last several cardiologist visits his numbers were in the 70's. This was causing some concern, although they only measured him for a few minutes at a time.

Noah was sick as well and is still coughing, but I have a gut feeling he is a little asthmatic. I'm going to give him a few more days and if it doesn't improve I will take him to the doctor.

Our niece, who has been living with us for the past few months and helping take care of Elijah, moved out last week. I am very excited for her and her future. She has an internship at a hospital to be a surgical tech. She is so very talented and will do so well!  Our house feels oddly quiet now with her gone and I realized that this is our opportunity to figure out who we are as family of four, instead of three. We have yet to do that.  

Once she moved out, I realized that this is the first time in over a year that our little family has lived in our house alone for any significant period of time. We have been incredibly blessed to have such giving family members who love our babies and are willing to sacrifice their time to care for them. These people have been integral to both Elijah’s physical health, as well as my mental health. A parent at work asked me about Elijah today and expressed the frustration I must feel and the "why me" attitude I must experience. I told her that I suppose it was better that I have a child with severe medical needs rather than someone else, not because I am super woman, but because I have the family and the friends and the general support structure to make this work and to make it okay. I will be forevery grateful to everyone who has stood by our side and continues to support us through this journey.

The Croup

Ugh. Our poor little guy has the croup. He started coughing on Saturday, but he was still his happy little self. He was a bit grumpy after his second nap, but I attributed that to teething. We put him down for the night like we always do and went to bed ourselves. Noah has had a cough for a week now and we were more worried about him and if he would be able to sleep. At 2am on Sunday, he was coughing a lot. I went in his room to check on him and to give him a little medicine and I instantly felt like something was wrong. I pick Elijah up out of his crib and realized that his breathing was loud... very, very loud (a strider). And very, very strained. My heart dropped. I took him to Dion and he instantly said we need to take him to the ER. Children's Hospital ER. Now. I felt like I was going to puke. With all that Elijah has gone through, nothing has been urgent while at home. Nothing has been scary. Those moments have always happened while we were in the hospital, surrounded by doctors and nurses. This was just us.

We started calling around to see if any family members could come over and stay with Noah. Both of us wanted to go to the ER with Elijah. Shanti, our niece, came over and we headed to CHLA. We have a hospital right around the corner from us, but we knew we needed to go to CHLA. Once we got to the ER they saw us immediately and got us into a room. I was certain we were going to be admitted. However, a nurse came into the room and checked his lungs and said that they sounded clear. I could feel the weight on my shoulders start to lift, just a little. Then a doctor came in and checked him. Elijah's lungs were clear, but the doctor could hear congestion and the strider he had was still very loud. The doctor said that Elijah had the croup. He gave Elijah an oral steroid and epi in the nebulizer. Over the next two hours, Elijah began to breath much easier and his mood improved drastically. By 7am we were told that we could go home. What a relief!

Elijah has slept a great deal today and isn't quite himself yet. Hopefully tonight will go smoothly, but I am trying to mentally prepare myself for a rough ride. It just breaks my heart to see him so miserable.

Spring Break & Cardio Appt

Last week was spring break for LAUSD. This meant an entire week, and a day, off of work! Noah also had spring break. Dion went to Las Vegas the first Sunday-Wednesday and the boys and I joined him on Wednesday. To be honest, I was a little nervous to be on my own with the boys for three nights and over three days. Noah is in his terrible threes (whoever said it was terrible twos was wrong) and Elijah can be fussy at times and hadn't been sleeping through the night for the past several months.

For those of you who know me, you know I can be a bit of a control freak. I find myself getting consumed with the "to do" of daily life and I don't enjoy the moments. I have a checklist of things that need to be done> lunches made- check, dinner- check, medicine given- check, bath- check, pjs-check... You get the idea. When Dion left on Sunday, I just decided to let go. To let things land where they may and not stress about it. If the kids didn't go to bed on time, it would not be the end of the world. If Noah's dinner was more convenient than healthy, so be it. I decided to relax and try to enjoy the break and you know what?  I did. I enjoyed the kids. I had fun. Things stopped being work, and became fun. Plain and simple fun. It was fantastic. We went on walks and got frozen yogurt. We went to the beach and had lunch and Noah rode his bike. We had fun.

On Wednesday, we took the short flight to Las Vegas. Noah has been on several flights before but this was the first time he really realized what was happening. He was so excited and did so well. Elijah loved being out and about and handled the flight really well. We took my sister with us as a kind of built in babysitter and she was incredibly helpful. I have always been one of those people who totally judged others who took their kids to Vegas. I always wondered what on earth people did with kids in Vegas. Well, I found out! Noah went to a shark tank at Mandalay Bay, we spent time at the pool and the playground (at the timeshare where we stayed), and of course meals were always an occasion. Friends of ours were also there with their kids and it was great to be away from daily life and relaxing with friends. Both boys adjusted with ease to their new surroundings and Elijah even slept through the night!

Lyndsay stayed with the boys at night and Dion and I were able to sneak away for a good meal and some quality time. There are times, among all the craziness of daily living, that I miss Dion even if he is in the same room as me. I miss those quiet times with just the two of us. It makes me grateful for little date nights and small get-aways. 

The boys did great with the drive home and enjoyed a stop at good ol' Charlie Browns. It brought back memories going back there. I remember going there as a kid myself. We all got shakes (even Elijah got a little ice cream) and wandered the store.This was our first family vacation and it could not have gone better.

On a completely unrelated topic, Elijah went to the cardiologist today. He is doing well and we don't have to go back for two months! That is the longest we have ever gone between appointments. They think that they will push his next cath off until next January. Dr. Sklansky is still a little concerned about the low function of his ventricle and has upped his Enalipril dosage. However, his lung function is looking even better and his lung seems to be expanding. Poor Dion had to deal with a very unhappy baby during the echo and appointment. Elijah didn't want anyone touching him except his daddy and this created a very unhappy little guy. I think he may have a little "white coat syndrome" from all of the procedures he has had done. Hopefully the two months between appointments will help.

Elijah is One

I've been trying to  figure out what I wanted to write for this post for over a week and I have yet to come up with anything elegant and fitting. So I gave up and decided to just write.

Elijah turned one last wed. Can you believe it? Elijah is one. It was a little less than a year ago when Dr. Devore told us that our son had a condition called HLHS. I was 12 weeks pregnant at the time. I just sat there shocked. Devastated. Scared. So so so scared. I think I have been scared every day since. But last Wednesday I wasn't scared. I wasn't worried. I wasn't trying to figure out what comes next or plan for the next big hurtle. Last Wednesday I was happy. I let Elijah eat whatever the heck he wanted (which is sooooo unlike me if you weren't already aware).  I let the boys stay up a little late. I marveled at what our family has become and of the joy this little boy has brought to our lives. We have struggled this year. We have had a great deal of heartache and tears this year.  But nothing outweighs the joy that a smile from Elijah brings my heart.

It was a little less than a year ago when Dion and I were given a choice. We had a decision to make that no one should have to face. We decided that we wanted to give our little Elijah a fighting chance. I look at him and I am so grateful we made that choice. He has endured what no person, let alone baby, should every have to go through. This one year old has had two open heart surgeries, a lung plication, three caths, and a ridiculous number of xrays and echos. He has been hospitalized for months and yet here he sits, playing with his brother acting just like any other one year old boy.  Elijah cruises, crawls, says dadada, mimics you, kisses when you ask, waves goodbye, and loves his brother like no other.  I'm not going to pretend that he is like any other one year old, but I am going to revel in this moment for a little longer. There is so much uncertainty in the future; I'm going to sit with the certainty of this moment for a bit longer.

Cardio Appt

Elijah had his cardio appointment today. They ran all the usual tests and had an exam. His diaphragm seems to be re-engaging but is still not fully functioning. His heart is functioning better but the cardiologist thinks it's time to put him on Enalapril. This should help improve the function even more. I'm not sure how I feel about this. I, of course, want to give him whatever he needs. However, I hate the idea of yet another medicine. We already give him two meds each and every day and I would rather not add another one. When you research the drug, it is used for heart failure. Ugh. That just sounds so bad. I realize he has probably been in "heart failure" for a while... maybe I have been in denial but I sure do hate seeing those words in writing.

They were happy with his growth. He isn't on the growth chart yet, but he is growing on his curve and slowly catching up. Dr. Sklansky would like to schedule another cath in a few months (after flu season is done) in order to plug the rest of the collateral arteries in his lungs. The blood flow through his PA is better, but still competing with the collateral arteries. The little guy's pulse ox was a bit lower than it had been at the last visit. Although not alarming, it is something that the doctor would like to keep on eye on. We go back in six weeks to do another work up. All in all, it was a positive visit.  Elijah seems to be doing well and the cardiologist was pleased.

Noah is doing better. It seems the new antibiotic is working well. Both boys have been sleeping much, much better since we moved them into separate rooms.  Before we had kids, I never realized just how vital sleep was to a person.  Lack of sleep can affect every aspect of a person's life.  I am hoping that with more sleep, Elijah will be able to grow more. Only time will tell!

Rough Week

Wow... last week was one of our toughest yet. Elijah has been doing well, but Noah has been struggling. Sunday night, after a great weekend, Noah had a horrible time going to sleep. We chalked it up to a cranky three year old. He woke up Elijah several times before 9pm. By 10:30pm, Noah was screaming in his bed. Dion brought him to our bed. If you know us well, you know that we are staunchly against our kids sleeping in our bed. I have no issue with other families that practice co-sleeping, it is just not something our family wants to do. Well, Sunday night we broke our own rule for the first time. Noah was a mess. He was screaming, trying to sleep, but screaming some more. It was awful. I didn't know what the problem was or how to fix it. He couldn't communicate with me what was bothering him. The screaming/sleeping lasted about 5hrs before exhaustion kicked in and he fell asleep. Then Elijah decided to get up for the day at 4:30am. And Noah was back up.

Dion and I couldn't figure out what was wrong with him. By morning he seemed ok except he had a cough. We thought that perhaps it could be behavioral, but the screaming seemed to be associated with pain. I decided to keep him home and take him to the doctor to rule out illness. I am so glad I did. He had a double ear infection and a respiratory infection. Poor kid. His doctor put him on antibiotics and sent us on our way.

Monday night, Elijah decided to get up at midnight and not go back to sleep until 3am. Because the boys share a room, we can't just leave him in there to figure it out and put himself to sleep because the crying will wake up Noah. Ugh. Let me tell you that getting up at 5am with both boys only to have to go to work after getting 3 hours of sleep for several nights in a row is torture. Torture. Tuesday night the boys went to sleep without a problem but both were up by 4:30am. When Elijah wakes up for a bottle, he wakes up Noah. Neither will go back to sleep. Wednesday night, Noah woke up screaming several times throughout the night. I couldn't figure out what was wrong with him. He would go back to sleep, only to wake up an hour later. They were both up for the morning by 4:30. I'm sorry, but I consider 4:30am still night time. I sure wish my kids would get that memo.

Thursday night was Valentine's Day. Our niece offered to babysit so that Dion and I could go to dinner. We got the kids all ready for bed and put Elijah down for the night. Noah was in his PJs and ready to go. Dion and I went and had a nice dinner. It was nice to relax and have a meal together and get to focus on one another.

When we got home, we walked in to find both boys awake and crying on the couch. Our niece was trying to calm them but they were not happy. I got both boys back to bed only to have Noah wake up screaming again. We had a repeat of Sunday night. Screaming for hours mixed with a little sleeping. Exhaustion... pure and simple. We gave him some motrin and that seemed to help a little. By 3am he seemed to finally sleep. By now Dion and I were beyond ourselves. Dion agreed to take Noah back to the doctor.  He took Noah back in only to find out that Noah's ears were much, much worse. He is now on stronger antibiotics. Poor kid.

We also decided that it was time to separate the boys. If you are at all familiar with our house, you know that we have three bedrooms, but one is set up as an office/guest room and is far from the rest of the rooms. We didn't want either of our kids in that room, but desperate times call for desperate measures. Friday night we moved Elijah's crib into the guest room. Let me tell you, that is the best thing we have done in a long time. We are finally getting some sleep! Elijah has slept through the night twice since making the move. He is still up for the day by 6:30am but I will take that over 4:30am any day.

The moral of this story? I have no clue. I'm too exhausted to come up with a moral...

The New Normal

It's early Sunday morning. The boys are running around, playing and having fun. I'm sitting here with my coffee and it dawns on me... this is our new normal. And you know what? It's quite good. Elijah is as active as ever. He is sleeping better, only getting up once a night. He is growing, although slowly. He is still not on the growth chart but he is growing on a curve. I am hoping he will be 17lbs by the time he is one (next month!), but he will most likely only be 16lbs. I can't believe he will be one next month. This year has gone by in such a blur. Sometimes I look at him and I still see my little newborn in the hospital with his chest open. He has come so, so far in such a short time.  Noah is thriving. He is in preschool and doing so well. He has been through so many changes this year and he has been forced to adjust again and again. And yet here he is, loving his brother and his family. I marvel at him every day.

This week is CHD awareness week. It breaks my heart to know that so many people have to endure what we have gone through, and in some instances, even worse. My heart goes out to those families. I encourage you take a moment during your busy week to remember those who now have heart angels and those who continue to fight. Congenital Heart Defects are more common than many people realize. Help us spread awareness.

Weight Gain

Just a quick update! It seems that Elijah is gaining weight! He is around 14lbs 9oz. He is eating a ton and pulling himself up. He loves cruising on furniture and hates sitting still. I am a little concerned that he isn't verbalizing quite like he should, but I am hoping it's just because all of his energy is going toward being physical. Noah loves the new mobile Elijah. Noah wants to play with him but doesn't quite understand that Elijah is still a baby and needs to be handled gently. It's quite an adventure at our house.

On a completely different topic, Dion and I have decided that it is time to get healthy. We have committed to a three week diet (no carbs, sugar, or alchohol). Ugh. I am seriously testing my self control. It's so easy to justify stuffing your mouth with comfort food when you have a child that is sick. You are in the hospital all day, and that candy bar is calling your name... you think, eh, my son is sick. I'm stressed and tired. I DESERVE that candy bar. Yeah... Substitute "candy bar" for anything- cheeseburger, ice cream, french fries...and you get an unhealthy mom and dad. I need to clean out my system and reestablish my eating habits. Not to mention my over all lack of self control. I have yet to figure out how to fit a work out into my schedule, the least I can do is nourish my body in a healthy manner. So here we are, five days into our plan, and man oh man how I would love a big, fat, juicy cheeseburger...

Cardiologist Update

Elijah had his cardiologist appointment on Friday, the day after being discharged from CHLA. Overall, things look positive. The card was pleased with his heart function and described it as "low-normal." He categorized Elijah's heart function as "low" at the last few appointments. Elijah's heart is larger than it should be but Dr. Sklansky wasn't particularly concerned. He continues to see reverse blood flow through his PA which contradicts what the doctor at CHLA saw. If you remember from my last post, I was concerned about Elijah not having the artery that leads to his left arm. The card wasn't particularly bothered by this. He said that it used to be routine to sacrifice this artery during the Norwood and although it can cause growth issues in his left arm, it shouldn't be anything drastic. We are still going to follow up with the surgeon before his Fontan in a year or two. The best news was that we have no procedures scheduled and we have six weeks until the next cardiologist appointment. I realized that it is only two additional weeks between appointments, but man I find it exciting. The goal now is to get him to gain weight. Grow baby grow!

Oh, and not only is our little guy pulling himself up and standing, but he is finally crawling! Yeah! He gets a little pissy after a while, but he is doing it! He is still recovery from the hospital stay and we are back to getting up with him several times a night. We are both tired and I am a little worried about what the upcoming week will bring. He isn't eating like he should be and that stresses me out a bit. Dion doesn't worry about his eating, but I do. I worry about everything.

On another front, winter break ends today. I can't help but be a little sad. It has been really nice hanging out with my boys over the break. Monica went back to Alaska, so we will be having new people watch Elijah. I can't help but be a little nervous about this transition. I know that he will be fine and I trust the people who will be with him, but Monica was such a comfort and I will miss that. She loved him as if he were her own. You can't pay people to do that. We were really blessed to have her stay with us as long as she did.

Cath Results

After only one night in the hospital, Elijah was discharged. We are so happy to have only spent one night and not needed further interventions. He had his cath yesterday and while the procedure went well, the results are... not good and not bad. They were able to coil some of the collateral arteries in his left lung. They expected to see better blood flow to his upper left lung after they placed the coils and yet there is still compromised flow. They were not able plug all of the collaterals.

The blood flow through his PA looks a little improved and the arch narrowing was not an issue. However, they discovered that he does not have the artery that leads to his left arm. His body has compensated for this by created more collateral arteries to supply blood. This could be an issue as he gets older and may/may not effect growth in that arm. It could cause issues as an adult when using his left arm. His body will be forced to "steal" blood from his brain in order to operate his left arm. This is the first we have heard of any of this and it was a little shocking. We hope to explore ways to address this at his next surgery. On a good note, it seems his his left diaphragm may be re-engaging. His breathing is looking better as well. We have an appointment with his cardiologist tomorrow and we will see what he says.

Cath Tomorrow...

Tomorrow Elijah will be having another cath. They have flown in special equipment for the procedure and they have already prepared me for a long day. I have such a conflict of emotions. On one hand I am excited to get this done and over with and have him "fixed". On the other hand, I am apprehensive and scared. We have rescheduled several times already because of illness. Finally both he and Noah are well and all of the pieces are in place. Yet I am still dreading tomorrow.

They will be trying to "plug" all of his collateral arteries, adjust the blood flow through his PA, and examine and possibly stent his arch. Both the nurse and doctor have told me it is incredibly tedious and time consuming. Please keep him in your thoughts and prayers tomorrow.