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.